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1.
J Med Internet Res ; 26: e49309, 2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38901021

RESUMO

BACKGROUND: Interest in the application of predictive risk models (PRMs) in health care to identify people most likely to experience disease and treatment-related complications is increasing. In cancer care, these techniques are focused primarily on the prediction of survival or life-threatening toxicities (eg, febrile neutropenia). Fewer studies focus on the use of PRMs for symptoms or supportive care needs. The application of PRMs to chemotherapy-related symptoms (CRS) would enable earlier identification and initiation of prompt, personalized, and tailored interventions. While some PRMs exist for CRS, few were translated into clinical practice, and human factors associated with their use were not reported. OBJECTIVE: We aim to explore patients' and clinicians' perspectives of the utility and real-world application of PRMs to improve the management of CRS. METHODS: Focus groups (N=10) and interviews (N=5) were conducted with patients (N=28) and clinicians (N=26) across 5 European countries. Interactions were audio-recorded, transcribed verbatim, and analyzed thematically. RESULTS: Both clinicians and patients recognized the value of having individualized risk predictions for CRS and appreciated how this type of information would facilitate the provision of tailored preventative treatments or supportive care interactions. However, cautious and skeptical attitudes toward the use of PRMs in clinical care were noted by both groups, particularly in relationship to the uncertainty regarding how the information would be generated. Visualization and presentation of PRM information in a usable and useful format for both patients and clinicians was identified as a challenge to their successful implementation in clinical care. CONCLUSIONS: Findings from this study provide information on clinicians' and patients' perspectives on the clinical use of PRMs for the management of CRS. These international perspectives are important because they provide insight into the risks and benefits of using PRMs to evaluate CRS. In addition, they highlight the need to find ways to more effectively present and use this information in clinical practice. Further research that explores the best ways to incorporate this type of information while maintaining the human side of care is warranted. TRIAL REGISTRATION: ClinicalTrials.gov NCT02356081; https://clinicaltrials.gov/study/NCT02356081.


Assuntos
Grupos Focais , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Antineoplásicos/efeitos adversos , Antineoplásicos/uso terapêutico , Adulto , Idoso , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Medição de Risco/métodos , Entrevistas como Assunto , Atitude do Pessoal de Saúde , Pesquisa Qualitativa , Percepção
2.
Palliat Med ; 37(5): 771-781, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-37002562

RESUMO

BACKGROUND: Palliative care, a recognised component of care by the World Health Organization is poorly developed in low- and middle-income countries. Mobile phone technology, an effective way to increase access and sustainability of healthcare systems globally, has demonstrated benefits within palliative care service delivery, but is yet to be utilised in Ethiopia. AIM: To co-design, develop and evaluate a mobile phone based remote monitoring system for use by palliative care patients in Ethiopia. DESIGN: Two-phase co-design approach comprising multiple methods that is stakeholder interviews, focus groups, user-co-creation activities and healthcare worker prioritisation discussions 2019-2020. Phase-1 interviews (n = 40), Phase-2 focus groups (n = 3) and interviews (n = 10). SETTING/PARTICIPANTS: Hospice Ethiopia and Yekatit 12 Medical College Hospital: healthcare workers, palliative care patients, family carers & software-developers. RESULTS: Co-design activities lead to development of the prototype 'Ayzot' application, which was well received and reported to be easy to use. Patients, and family caregivers saw provision of self-care information and symptom management as a key function of the App and expressed very positive attitudes towards such information being included. Healthcare workers found the App offered service benefits, in terms of time and cost-savings. CONCLUSION: This paper provides a detailed example of the development and design of a prototype remote monitoring system using mobile phone technology for palliative care use in Ethiopia. Further development and real-world testing are required, to not only understand how it acts within usual care to deliver anticipated benefits but also to explore its effectiveness and provide cost estimates for wider implementation.


Assuntos
Telefone Celular , Cuidados Paliativos na Terminalidade da Vida , Aplicativos Móveis , Humanos , Cuidados Paliativos/métodos , Atenção à Saúde
3.
J Med Internet Res ; 25: e45181, 2023 04 14.
Artigo em Inglês | MEDLINE | ID: mdl-37058337

RESUMO

BACKGROUND: Colonoscopy is the gold standard for lower gastrointestinal diagnostics. The procedure is invasive, and its demand is high, resulting in long waiting times. Colon capsule endoscopy (CCE) is a procedure that uses a video capsule to investigate the colon, meaning that it can be carried out in a person's own home. This type of "hospital-at-home" service could potentially reduce costs and waiting times, and increase patient satisfaction. Little is currently understood, however, about how CCE is actually experienced and accepted by patients. OBJECTIVE: The aim of this study was to capture and report patient experiences of the CCE technology (the capsule and associated belt and recorder) and of the new clinical pathway for the CCE service being rolled out as part of routine service in Scotland. METHODS: This was a mixed methods service evaluation of patient experiences of a real-world, deployed, managed service for CCE in Scotland. Two hundred and nine patients provided feedback via a survey about their experiences of the CCE service. Eighteen of these patients took part in a further telephone interview to capture more in-depth lived experiences to understand the barriers and opportunities for the further adoption and scaling up of the CCE service in a way that supports the patient experience and journey. RESULTS: Patients overall perceived the CCE service to be of significant value (eg, mentioning reduced travel times, reduced waiting times, and freedom to complete the procedure at home as perceived benefits). Our findings also highlighted the importance of clear and accessible information (eg, what to expect and how to undertake the bowel preparation) and the need for managing expectations of patients (eg, being clear about when results will be received and what happens if a further colonoscopy is required). CONCLUSIONS: The findings led to recommendations for future implementations of managed CCE services in National Health Service (NHS) Scotland that could also apply more widely (United Kingdom and beyond) and at a greater scale (with more patients in more contexts). These include promoting CCE with, for, and among clinical teams to ensure adoption and success; capturing and understanding reasons why patients do and do not opt for CCE; providing clear information in a variety of appropriate ways to patients (eg, around the importance of bowel preparation instructions); improving the bowel preparation (this is not specific to CCE alone); providing flexible options for issuing and returning the kit (eg, dropping off at a pharmacy); and embedding formative evaluation within the service itself (eg, capturing patient-reported experiences via surveys in the information pack when the equipment is returned).


Assuntos
Endoscopia por Cápsula , Endoscopia por Cápsula/métodos , Endoscopia por Cápsula/normas , Escócia , Inquéritos e Questionários , Entrevistas como Assunto , Medicina Estatal/tendências , Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/diagnóstico
4.
J Med Internet Res ; 24(9): e39681, 2022 09 06.
Artigo em Inglês | MEDLINE | ID: mdl-36066928

RESUMO

BACKGROUND: Digital innovations are yet to make real impacts in the care home sector despite the considerable potential of digital health approaches to help with continued staff shortages and to improve quality of care. To understand the current landscape of digital innovation in long-term care facilities such as nursing and care homes, it is important to find out which clinical decision support tools are currently used in long-term care facilities, what their purpose is, how they were developed, and what types of data they use. OBJECTIVE: The aim of this review was to analyze studies that evaluated clinical decision support tools in long-term care facilities based on the purpose and intended users of the tools, the evidence base used to develop the tools, how the tools are used and their effectiveness, and the types of data the tools use to contribute to the existing scientific evidence to inform a roadmap for digital innovation, specifically for clinical decision support tools, in long-term care facilities. METHODS: A review of the literature published between January 1, 2010, and July 21, 2021, was conducted, using key search terms in 3 scientific journal databases: PubMed, Cochrane Library, and the British Nursing Index. Only studies evaluating clinical decision support tools in long-term care facilities were included in the review. RESULTS: In total, 17 papers were included in the final review. The clinical decision support tools described in these papers were evaluated for medication management, pressure ulcer prevention, dementia management, falls prevention, hospitalization, malnutrition prevention, urinary tract infection, and COVID-19 infection. In general, the included studies show that decision support tools can show improvements in delivery of care and in health outcomes. CONCLUSIONS: Although the studies demonstrate the potential of positive impact of clinical decision support tools, there is variability in results, in part because of the diversity of types of decision support tools, users, and contexts as well as limited validation of the tools in use and in part because of the lack of clarity in defining the whole intervention.


Assuntos
COVID-19 , Assistência de Longa Duração , Adulto , COVID-19/prevenção & controle , Hospitalização , Humanos , Casas de Saúde
5.
J Med Internet Res ; 23(7): e21502, 2021 07 26.
Artigo em Inglês | MEDLINE | ID: mdl-34309580

RESUMO

BACKGROUND: Sexual dysfunction is a frequent side effect associated with different prostate cancer treatment approaches. It can have a substantial impact on men and their partners and is associated with increased psychological morbidity. Despite this, sexual concerns are often not adequately addressed in routine practice. Evidence-based web-based interventions have the potential to provide ongoing information and sexual well-being support throughout all stages of care. OBJECTIVE: The aim of this study is to examine the efficacy of a web-based self-management intervention designed to maximize sexual well-being in men living with prostate cancer and explore user perspectives on usability and acceptability. METHODS: We used a single-arm study design, and participants were provided with access to the 5-step intervention for a period of 3 months. The intervention content was tailored based on responses to brief screening questions on treatment type, relationship status, and sexual orientation. Efficacy was assessed by using two-tailed, paired sample t tests for comparing the mean differences between pre- and postintervention measurements for exploring the participants' self-reported knowledge and understanding, sexual satisfaction, and comfort in discussing sexual issues. Usability and acceptability were determined based on the program use data and a postintervention survey for exploring perceived usefulness. RESULTS: A total of 109 participants were recruited for this study. Significant postintervention improvements at follow-up were observed in the total scores (out of 20) from the survey (mean 12.23/20 points, SD 2.46 vs mean 13.62/20, SD 2.31; t88=9.570; P=.001) as well as in individual item scores on the extent to which the participants agreed that they had sufficient information to manage the impact that prostate cancer had on their sex life (mean 2.31/4 points, SD 0.86 vs mean 2.57/4, SD 0.85; t88=3.660; P=.001) and had the potential to have a satisfying sex life following treatment (mean 2.38/4 points, SD 0.79 vs mean 3.17/4, SD 0.78; t88=7.643; P=.001). The median number of intervention sessions was 3 (range 1-11), and intervention sessions had a median duration of 22 minutes (range 8-77). Acceptable usability scores were reported, with the highest result observed for the question on the extent to which the intervention provided relevant information. CONCLUSIONS: This study provides evidence on the efficacy of a tailored web-based intervention for maximizing sexual well-being in men living with prostate cancer. The results indicate that the intervention may improve one's self-perceived knowledge and understanding of how to manage sexual issues and increase self-efficacy or the belief that a satisfactory sex life could be achieved following treatment. The findings will be used to refine the intervention content before testing as part of a larger longitudinal study for examining its effectiveness.


Assuntos
Intervenção Baseada em Internet , Neoplasias da Próstata , Autogestão , Humanos , Estudos Longitudinais , Masculino , Neoplasias da Próstata/terapia , Comportamento Sexual
6.
J Med Internet Res ; 22(11): e19180, 2020 11 12.
Artigo em Inglês | MEDLINE | ID: mdl-33180025

RESUMO

BACKGROUND: Patients with malignant pleural mesothelioma (MPM) have a life-limiting illness and short prognosis and experience many debilitating symptoms from early in the illness. Innovations such as remote symptom monitoring are needed to enable patients to maintain wellbeing and manage symptoms in a proactive and timely manner. The Advanced Symptom Management System (ASyMS) has been successfully used to monitor symptoms associated with cancer. OBJECTIVE: This study aimed to determine the feasibility and acceptability of using an ASyMS adapted for use by patients with MPM, called ASyMSmeso, enabling the remote monitoring of symptoms using a smartphone. METHODS: This was a convergent mixed methods study using patient-reported outcome measures (PROMs) at key time points over a period of 2-3 months with 18 patients. The Sheffield Profile for Assessment and Referral for Care (SPARC), Technology Acceptance Model (TAM) measure for eHealth, and Lung Cancer Symptom Scale-Mesothelioma (LCSS-Meso) were the PROMs used in the study. Patients were also asked to complete a daily symptom questionnaire on a smartphone throughout the study. At the end of the study, semistructured interviews with 11 health professionals, 8 patients, and 3 carers were conducted to collect their experience with using ASyMSmeso. RESULTS: Eighteen patients with MPM agreed to participate in the study (33.3% response rate). The completion rates of study PROMs were high (97.2%-100%), and completion rates of the daily symptom questionnaire were also high, at 88.5%. There were no significant changes in quality of life, as measured by LCSS-Meso. There were statistically significant improvements in the SPARC psychological need domain (P=.049) and in the "Usefulness" domain of the TAM (P=.022). End-of-study interviews identified that both patients and clinicians found the system quick and easy to use. For patients, in particular, the system provided reassurance about symptom experience and the feeling of being listened to. The clinicians largely viewed the system as feasible and acceptable, and areas that were mentioned included the early management of symptoms and connectivity between patients and clinicians, leading to enhanced communication. CONCLUSIONS: This study demonstrates that remote monitoring and management of symptoms of people with MPM using a mobile phone are feasible and acceptable. The evidence supports future trials using remote symptom monitoring to support patients with MPM at home.


Assuntos
Mesotelioma Maligno/terapia , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Mesotelioma Maligno/mortalidade , Mesotelioma Maligno/patologia , Pessoa de Meia-Idade , Prognóstico , Análise de Sobrevida
7.
J Med Internet Res ; 22(12): e22034, 2020 12 15.
Artigo em Inglês | MEDLINE | ID: mdl-33320099

RESUMO

BACKGROUND: The status of the data-driven management of cancer care as well as the challenges, opportunities, and recommendations aimed at accelerating the rate of progress in this field are topics of great interest. Two international workshops, one conducted in June 2019 in Cordoba, Spain, and one in October 2019 in Athens, Greece, were organized by four Horizon 2020 (H2020) European Union (EU)-funded projects: BOUNCE, CATCH ITN, DESIREE, and MyPal. The issues covered included patient engagement, knowledge and data-driven decision support systems, patient journey, rehabilitation, personalized diagnosis, trust, assessment of guidelines, and interoperability of information and communication technology (ICT) platforms. A series of recommendations was provided as the complex landscape of data-driven technical innovation in cancer care was portrayed. OBJECTIVE: This study aims to provide information on the current state of the art of technology and data-driven innovations for the management of cancer care through the work of four EU H2020-funded projects. METHODS: Two international workshops on ICT in the management of cancer care were held, and several topics were identified through discussion among the participants. A focus group was formulated after the second workshop, in which the status of technological and data-driven cancer management as well as the challenges, opportunities, and recommendations in this area were collected and analyzed. RESULTS: Technical and data-driven innovations provide promising tools for the management of cancer care. However, several challenges must be successfully addressed, such as patient engagement, interoperability of ICT-based systems, knowledge management, and trust. This paper analyzes these challenges, which can be opportunities for further research and practical implementation and can provide practical recommendations for future work. CONCLUSIONS: Technology and data-driven innovations are becoming an integral part of cancer care management. In this process, specific challenges need to be addressed, such as increasing trust and engaging the whole stakeholder ecosystem, to fully benefit from these innovations.


Assuntos
Grupos Focais/métodos , Neoplasias/terapia , Análise de Dados , Humanos
8.
Support Care Cancer ; 26(11): 3729-3737, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-29779057

RESUMO

PURPOSE: Developing new supportive/palliative care services for lung cancer should encompass effective ways to promptly identify and address patients' healthcare needs. We examined whether an in-clinic, nurse-led consultation model, which was driven by use of a patient-reported outcomes (PRO) measure, was feasible and acceptable in the identification of unmet needs in patients with lung cancer. METHODS: A two-part, repeated-measures, mixed-methods study was conducted. Part 1 employed literature reviews and stakeholder focus group interviews to inform selection of a population-appropriate needs assessment PRO measure. In Part 2, lung cancer nurse specialists (CNS) conducted three consecutive monthly consultations with patients. Recruitment/retention data, PRO data, and exit interview data were analysed. RESULTS: The Sheffield Profile for Assessment and Referral to Care was the PRO measure selected based on Part 1 data. Twenty patients (response rate: 26%) participated in Part 2; 13 (65%) participated in all three consultations/assessments. The PRO measure helped patients to structure their thinking and prompted them to discuss previously underreported and/or sensitive issues, including such topics as family concerns, or death and dying. Lung CNS highlighted how PRO-measures-driven consultations differed from previous ones, in that their scope was broadened to allow nurses to offer personalised care. Small-to-moderate reductions in all domains of need were noted over time. CONCLUSIONS: Nurse-led PRO-measures-driven consultations are acceptable and conditionally feasible to holistically identify and effectively manage patient needs in modern lung cancer care. PRO data should be systematically collected and audited to assist in the provision of supportive care to people with lung cancer.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias Pulmonares/enfermagem , Enfermeiros Clínicos , Aceitação pelo Paciente de Cuidados de Saúde , Medidas de Resultados Relatados pelo Paciente , Encaminhamento e Consulta , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Viabilidade , Feminino , Grupos Focais , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Humanos , Liderança , Neoplasias Pulmonares/terapia , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Enfermeiros Clínicos/organização & administração , Enfermeiros Clínicos/normas , Projetos Piloto , Padrões de Prática em Enfermagem/organização & administração , Padrões de Prática em Enfermagem/normas , Encaminhamento e Consulta/organização & administração , Encaminhamento e Consulta/normas
9.
Artigo em Inglês | MEDLINE | ID: mdl-28857296

RESUMO

Oesophageal cancer (EC) is characterised by vague symptoms and is often diagnosed at an advanced stage, leading to poor outcomes. Therefore, we aimed to investigate whether there might be any patient factors contributing to delay in EC diagnosis, and focused on the symptom appraisal and help-seeking strategies of people diagnosed with EC in the UK. Semi-structured interviews were conducted with 14 patients aged >18 years with localised EC at point of diagnosis. Purposive sampling was used to include patients from 1 to 9 months post-diagnosis. Analysis of the interviews identified three main themes: Interpreting symptoms, Triggers to seeking help and Making sense of an unfamiliar cancer. Findings suggested that participants normalised symptoms or used previous health experiences as a means to interpret their symptoms. The majority of participants were not alarmed by their symptoms, mainly because they had very little knowledge of EC specific symptoms. Lack of knowledge also influenced participants' sense-making of their diagnosis. The findings highlight that the process of symptom appraisal in EC is likely to be inaccurate, which may hinder early presentation and thus diagnosis. Public health campaigns communicating EC specific symptoms, however, could shorten the appraisal period and lead to earlier diagnosis.


Assuntos
Adenocarcinoma/diagnóstico , Carcinoma de Células Escamosas/diagnóstico , Neoplasias Esofágicas/diagnóstico , Conhecimentos, Atitudes e Prática em Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Avaliação de Sintomas , Adaptação Psicológica , Adenocarcinoma/complicações , Adenocarcinoma/fisiopatologia , Adenocarcinoma/psicologia , Adulto , Idoso , Carcinoma de Células Escamosas/complicações , Carcinoma de Células Escamosas/fisiopatologia , Carcinoma de Células Escamosas/psicologia , Dor no Peito/etiologia , Dor no Peito/fisiopatologia , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/fisiopatologia , Diagnóstico Tardio , Neoplasias Esofágicas/complicações , Neoplasias Esofágicas/fisiopatologia , Neoplasias Esofágicas/psicologia , Feminino , Refluxo Gastroesofágico/etiologia , Refluxo Gastroesofágico/fisiopatologia , Humanos , Masculino , Pessoa de Meia-Idade , Faringite/etiologia , Faringite/fisiopatologia , Pesquisa Qualitativa
10.
Eur J Cancer Care (Engl) ; 27(6): e12890, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-29993150

RESUMO

Close monitoring of chemotherapy toxicity can be instrumental in ensuring prompt symptom management and quality care. Our aim was to develop a brief clinical tool to enable daily assessment of chemotherapy toxicity and investigate/establish its content validity, feasibility/applicability, internal consistency and stability. Development of the Daily Chemotherapy Toxicity self-Assessment Questionnaire (DCTAQ) was based on an initial item pool created from two scoping reviews. Expert panel review (n = 15) and cognitive debriefing with patients with cancer (n = 7) were used to establish content validity. Feasibility/acceptability, applicability (self-report vs. interview-like administration), internal consistency (KR-20) and test-retest reliability (at 1-hr intervals) of the DCTAQ were field-tested with 82 patients with breast or colorectal cancer receiving active chemotherapy at eight hospitals. Initial development/content validity stages enabled item revisions and re-wording that led to a final, 11-item DCTAQ version with 10 core symptom items plus one open-ended "any other symptom" item. Feasibility and acceptability were demonstrated through the absence of participant withdrawals, absence of missing data and no complaints about tool length. The DCTAQ was found to have modest internal consistency (KR-20 = 0.56), but very good test-retest reliability. The DCTAQ is a brief clinical tool that allows for rapid and accurate daily assessments of chemotherapy toxicity in clinical practice.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Neoplasias da Mama/tratamento farmacológico , Neoplasias Colorretais/tratamento farmacológico , Monitoramento de Medicamentos/métodos , Adulto , Idoso , Constipação Intestinal/induzido quimicamente , Constipação Intestinal/diagnóstico , Diarreia/induzido quimicamente , Diarreia/diagnóstico , Fadiga/induzido quimicamente , Fadiga/diagnóstico , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Náusea/induzido quimicamente , Náusea/diagnóstico , Aceitação pelo Paciente de Cuidados de Saúde , Reprodutibilidade dos Testes , Autorrelato , Transtornos de Sensação/induzido quimicamente , Transtornos de Sensação/diagnóstico , Inquéritos e Questionários , Vômito/induzido quimicamente , Vômito/diagnóstico
11.
J Med Internet Res ; 19(1): e11, 2017 01 09.
Artigo em Inglês | MEDLINE | ID: mdl-28069561

RESUMO

BACKGROUND: Net survival rates of cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer the care of cancer survivors-individuals living with and beyond cancer-to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and health care professionals (HCPs), is an important contributor to this evolving model of care. Telehealth interventions are "complex," and understanding patient experiences of them is important in evaluating their impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth are yet to be synthesized. OBJECTIVE: To systematically identify, appraise, and synthesize qualitative research evidence on the experiences of adult cancer survivors participating in telehealth interventions, to characterize the patient experience of telehealth interventions for this group. METHODS: Medline (PubMed), PsychINFO, Cumulative Index for Nursing and Allied Health Professionals (CINAHL), Embase, and Cochrane Central Register of Controlled Trials were searched on August 14, 2015, and March 8, 2016, for English-language papers published between 2006 and 2016. Inclusion criteria were as follows: adult cancer survivors aged 18 years and over, cancer diagnosis, experience of participating in a telehealth intervention (defined as remote communication or remote monitoring with an HCP delivered by telephone, Internet, or hand-held or mobile technology), and reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) checklist for qualitative research was used to assess paper quality. The results section of each included article was coded line by line, and all papers underwent inductive analysis, involving comparison, reexamination, and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. RESULTS: Across the 22 included papers, 3 analytical themes emerged, each with 3 descriptive subthemes: (1) influence of telehealth on the disrupted lives of cancer survivors (convenience, independence, and burden); (2) personalized care across physical distance (time, space, and the human factor); and (3) remote reassurance-a safety net of health care professional connection (active connection, passive connection, and slipping through the net). Telehealth interventions represent a convenient approach, which can potentially minimize treatment burden and disruption to cancer survivors' lives. Telehealth interventions can facilitate an experience of personalized care and reassurance for those living with and beyond cancer; however, it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. CONCLUSIONS: Telehealth interventions can provide cancer survivors with independence and reassurance. Future telehealth interventions need to be developed iteratively in collaboration with a broad range of cancer survivors to maximize engagement and benefit.


Assuntos
Internet , Neoplasias/psicologia , Neoplasias/terapia , Telemedicina , Adulto , Humanos , Neoplasias/mortalidade , Preferência do Paciente , Satisfação do Paciente , Pesquisa Qualitativa , Sobreviventes/psicologia
12.
Gynecol Oncol ; 136(3): 478-90, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25462200

RESUMO

BACKGROUND: Women with cervical cancer constitute a patient population in need for ongoing, person-centred supportive care. Our aim was to synthesise current available evidence with regard to the supportive care needs of women living with and beyond cervical cancer. METHODS: A systematic review was conducted according to the PRISMA Statement guidelines. Seven electronic databases (DARE, Cochrane, MEDLINE, CINAHL, BNI, PsychINFO and EMBASE) were searched to identify studies employing qualitative and/or quantitative methods. Pre-specified selection criteria were applied to all records published between 1990 and 2013. Methodological quality evaluation was conducted using the standardised QualSyst evaluation tool. Findings were integrated in a narrative synthesis. FINDINGS: Of 4936 references initially retrieved, 15 articles (13 unique studies) met eligibility criteria. One study fell below a pre-specified 55% threshold of methodological quality and was excluded. Individual needs were classified into ten domains of need. Interpersonal/intimacy (10; 83.3%), health system/information (8; 66.7%), psychological/emotional (7; 58.3%) and physical needs (6; 50%) were those most frequently explored. Spiritual/existential (1; 8.3%), family-related (2; 16.7%), practical (2; 16.7%), and daily living needs (2; 16.7%) were only rarely explored. Patient-clinician communication needs and social needs were addressed in 4 studies (33.3%). Dealing with fear of cancer recurrence, concerns about appearance/body image, lack of sexual desire, requiring more sexuality-related information, dealing with pain, and dealing with difficulties in relationship with partner were the most frequently cited individual needs (≥4 studies). CONCLUSIONS: Despite a host of additional needs experienced by women with cervical cancer, a predominant focus on sexuality/intimacy and information seeking issues is noted. Study limitations preclude drawing conclusions as to how these needs evolve over time from diagnosis to treatment and subsequently to survivorship. Whether demographic or clinical variables such as age, race/ethnicity, disease stage or treatment modality play a moderating role, only remains to be answered in future studies.


Assuntos
Avaliação das Necessidades , Qualidade de Vida , Apoio Social , Sobreviventes/psicologia , Neoplasias do Colo do Útero/psicologia , Acesso à Informação , Feminino , Humanos , Saúde Mental , Assistência Centrada no Paciente , Relações Médico-Paciente , Neoplasias do Colo do Útero/terapia , Saúde da Mulher
13.
Semin Oncol Nurs ; 40(2): 151587, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38342642

RESUMO

OBJECTIVE: The aim of this study is to explore the relationship that people with cancer and their family caregivers develop with symptom management technology during chemotherapy. DATA SOURCES: A longitudinal and multi-perspective interpretative phenomenological approach was adopted. Data were collected using one-to-one in-depth interviews with people with colorectal cancer using supportive digital health symptom management technology (n=3) and their family caregivers (n=4) at two time points during chemotherapy treatment. Data were analyzed using interpretative phenomenological analysis and followed COREQ guidelines. CONCLUSION: People with cancer and their family caregivers can develop emotional bonds with supportive symptom management technology during cancer treatment. Digital health technology can be experienced as a person guiding them during their cancer treatment. Participants felt vulnerable after the technology was returned to the research team. Participants recognized that it was not the technology that successfully facilitated them through their initial chemotherapy cycles; rather, the technology helped them learn to manage their symptoms and promoted their self-efficacy, as well as how to emotionally respond. IMPLICATIONS FOR NURSING PRACTICE: The relationship and psychological bonds people with cancer and their family caregivers develop with technology during treatment may be critically important for oncology nurses to be aware of should digital health be prescribed within the outpatient model of cancer care. This study indicates that technology may not be needed for a full treatment experience, as digital health can promote confidence and self-efficacy regarding symptom management and prepare people with cancer to be independent after the digital health technology is returned to the research team. However, further research is needed regarding individual preferences for digital health provision.


Assuntos
Cuidadores , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Cuidadores/psicologia , Idoso , Neoplasias Colorretais/psicologia , Neoplasias Colorretais/terapia , Neoplasias Colorretais/tratamento farmacológico , Adulto , Estudos Longitudinais , Tecnologia Digital , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/enfermagem , Pesquisa Qualitativa , Saúde Digital
14.
JMIR Res Protoc ; 13: e51311, 2024 Mar 05.
Artigo em Inglês | MEDLINE | ID: mdl-38441946

RESUMO

BACKGROUND: Chronic pain is a highly prevalent condition and one of the most common reasons why people seek health care. As a result, chronic pain has a significant personal and economic burden. The COVID-19 pandemic has aggravated the situation for patients with chronic pain through increased risk factors (eg, anxiety or depression) as well as decreased access to health care. Digital health solutions to support people with chronic pain are becoming increasingly popular. Most of the research has focused on patient-facing digital health solutions, although it is clear that the involvement of health and care professionals is crucial in chronic pain care. Certainly, digital health solutions intended for the use of health and care professionals in the care of patients with chronic pain (ie, professional facing) exist, for example, for clinical decision support; however, no review has investigated the studies reporting these interventions. OBJECTIVE: The overall aim of this scoping review is to identify the available professional-facing digital health solutions for the purpose of chronic pain management. The objectives of this review are to investigate the components, target populations, and user settings of the available professional-facing digital solutions; health and care professionals' perspectives on using digital health solutions (if reported); the methods in which the digital health solutions are developed; and the outcomes of using professional-facing digital health solutions. METHODS: Databases including MEDLINE, Embase, CINAHL, PsycInfo, and Inspec will be searched for studies reporting professional-facing digital health solutions for chronic pain care, using a comprehensive search strategy developed for each of the specific databases. A total of 2 independent reviewers will screen the titles and abstracts for review inclusion and then conduct full-text screening. Any conflicts in study inclusion will be resolved by a third reviewer at each stage of the screening process. Following data extraction and quality assessment, a qualitative content analysis of the results will be conducted. This review will identify the available professional-facing digital health solutions for chronic pain management. The results of this review are likely to be heterogeneous in terms of content (ie, the digital solutions will serve a variety of purposes, settings, target populations, etc) and methods (ie, experimental and nonexperimental designs). RESULTS: The review is expected to finish in March 2024 and published in the summer of 2024. CONCLUSIONS: This protocol outlines the need for a scoping review to identify professional-facing digital health solutions for the management of chronic pain. Results from this review will contribute to the growing field of research into the utility of digital health for chronic pain management. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/51311.

15.
JMIR Res Protoc ; 13: e52469, 2024 Mar 07.
Artigo em Inglês | MEDLINE | ID: mdl-38451694

RESUMO

BACKGROUND: Chronic pain is a highly prevalent condition that requires multidisciplinary treatment. However, in the United Kingdom, access to specialist pain clinics where patients can receive medical multidisciplinary treatment is limited, and provision varies between health boards. As such, self-management of chronic pain using digital tools has been gaining traction recently, but evidence of its effectiveness from clinical-based trials focuses mainly on quantitative outcomes. OBJECTIVE: This systematic review aims to identify, appraise, and synthesize qualitative evidence on patients' experiences with digital health interventions (DHIs) for the management of chronic pain. METHODS: This systematic review will consider qualitative and mixed methods studies that explore the experience of patients (aged 18 years and older) with chronic pain engaging in DHIs to manage their pain. MEDLINE Ovid, PubMed, Embase, CINAHL, PsycINFO, and Scopus databases will be searched for published studies. The systematic review will be conducted in accordance with the ENTREQ (Enhancing Transparency in Reporting the Synthesis of Qualitative Research) guidelines. Following the 3-step thematic synthesis methodology of Thomas and Harden, titles and abstracts will be screened by 2 independent reviewers (AM and HM), and a third reviewer (MI or FM) will resolve any conflict that arises before the full-text screening. The Critical Appraisal Skills Programme checklist tool will be used to critically appraise the included studies. The extracted data will be imported to NVivo (QSR International), where thematic synthesis will be used to derive analytical themes from the included studies. RESULTS: Themes that encapsulate the patient experience will be identified from qualitative evidence, and these themes will shed light on the perceived benefits and disadvantages, usability, acceptability, and the overall impact digital tools can have on the lives of those with chronic pain. CONCLUSIONS: This systematic review will identify, appraise, and synthesize the overall experience of patients engaging in DHI to manage a diverse range of chronic pain conditions. By elaborating the patient experience through qualitative analysis, the findings from this review will enhance our current understanding of the experiences of patients with chronic pain using digital tools for the self-management of their pain and highlight what person-centered elements are essential for future DHI development. TRIAL REGISTRATION: PROSPERO CRD42023445100; http://tinyurl.com/4z77khfs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52469.

16.
JMIR Res Protoc ; 13: e56888, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38820581

RESUMO

BACKGROUND: Cancer-related cognitive impairment (CRCI) is commonly experienced by patients with cancer during treatment, and 35% of patients experience cognitive impairment after treatment completion. Impairments in memory, attention, executive functioning, and information processing speed are most reported and often negatively impact daily functioning and quality of life (QoL). Despite the large scale of reports, this adverse side effect is underinvestigated across common cancer types, and there is a lack of insight into the CRCI experience. OBJECTIVE: This qualitative synthesis aims to explore the evidence in relation to the experience of CRCI across common cancers. It also aims to understand the prevalence of CRCI across various cancer types, cognitive domains, and its impact on QoL and functional ability. METHODS: A comprehensive search of databases, including PubMed, American Psychological Association PsycINFO, CINAHL, and Scopus, will be conducted. A total of 2 independent reviewers will screen titles and abstracts for inclusion, followed by full-text screening. A third reviewer will resolve any arising conflicts in the process of data screening and inclusion. Subsequently, data extraction and quality assessment using the Critical Appraisal Skills Programme (CASP) tool will be conducted. The results will be analyzed using thematic analysis. RESULTS: This review is part of a PhD program funded in January 2023. The review commenced in June 2023, and data analysis is currently in progress. The qualitative synthesis will explore the experiences of CRCI across common cancers. The included studies are expected to report on numerous cancer types such as breast cancer, prostate cancer, leukemia, and lung cancer. The included study types are most likely to be interviews, focus groups, and surveys with qualitative components. CONCLUSIONS: This protocol highlights the need for a qualitative synthesis that will explore the experience of CRCI across common cancer types. It will provide valuable insight into the lived experience of CRCI and the cognitive domains that may be disproportionately affected. There is a growing demand for further management interventions and clinically tested treatments of CRCI and the qualitative exploration of patient experience is crucial for their development. This qualitative synthesis will inform future developments and will contribute to improving QoL after cancer. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56888.


Assuntos
Disfunção Cognitiva , Neoplasias , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Neoplasias/complicações , Neoplasias/psicologia , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/terapia , Disfunção Cognitiva/psicologia , Revisões Sistemáticas como Assunto , Masculino , Feminino
17.
JMIR Res Protoc ; 13: e53727, 2024 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-39265159

RESUMO

BACKGROUND: Physical activity is a critical component of both well-being and preventative health, reducing the risk of both chronic mental and physical conditions and early death. Yet, there are numerous groups in society who are not able to undertake as much physical activity as they would like to. This includes informal (unpaid) carers, with the United Kingdom national survey data suggesting that 81% would like to do more physical activity on a regular basis. There is a clear need to develop innovations, including digital interventions that hold implementation potential to support regular physical activity in groups such as carers. OBJECTIVE: This study aims to expand and personalize a cross-platform digital health app designed to support regular physical activity in carers of people with dementia for a period of 8 weeks and evaluate the potential for implementation. METHODS: The CareFit for dementia carers study was a mixed methods co-design, development, and evaluation of a novel motivational smartphone app to support home-based regular physical activity for unpaid dementia carers. The study was planned to take place across 16 months in total (September 1, 2022, to December 31, 2023). The first phase included iterative design sprints to redesign an initial prototype for widespread use, supported through a bespoke content management system. The second phase included the release of the "CareFit" app across Scotland through invitations on the Apple and Google stores where we aimed to recruit 50 carers and up to 20 professionals to support the delivery in total. Partnerships for the work included a range of stakeholders across charities, health and social care partnerships, physical activity groups, and carers' organizations. We explored the implementation of CareFit, guided by both Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) and the Complex Intervention Frameworks. RESULTS: Project processes and outcomes were evaluated using mixed methods. The barriers and enablers for professional staff to signpost and use CareFit with clients were assessed through interviews or focus groups and round stakeholder meetings. The usability of CareFit was explored through qualitative interviews with carers and a system usability scale. We examined how CareFit could add value to carers by examining "in-app" data, pre-post questionnaire responses, and qualitative work, including interviews and focus groups. We also explored how CareFit could add value to the landscape of other online resources for dementia carers. CONCLUSIONS: Results from this study will contribute new knowledge including identifying (1) suitable pathways to identify and support carers through digital innovations; (2) future design of definitive studies in carer populations; and (3) an improved understanding of the Reach, Effectiveness, Adoption, Implementation, and Maintenance across a range of key stakeholders. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/53727.


Assuntos
Cuidadores , Demência , Exercício Físico , Estudos de Viabilidade , Aplicativos Móveis , Humanos , Cuidadores/psicologia , Demência/enfermagem , Reino Unido , Masculino , Feminino
18.
J Plast Reconstr Aesthet Surg ; 88: 425-435, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38091684

RESUMO

A real-time 3D Telemedicine system - leveraging Microsoft's Holoportation™ communication technology - enabled an international multidisciplinary team meeting (MDT) to consult with complex reconstructive patients before, during, and after an overseas surgical collaboration. METHODS: A proof-of-concept international 3D MDT clinic took place in November 2022, between the Canniesburn Plastic Surgery Unit, UK, and the National Reconstructive Plastic Surgery and Burns Centre, Korle Bu Teaching Hospital, Ghana. The 3D system was utilised 1) previsit to assess patients and enable logistical planning, 2) on-site in Ghana to further allow patients to see themselves and proposed operations in 3D, and 3) post visit to debrief the team and patients. RESULTS: Four Ghana patients were followed through their patient journey (mandibular ameloblastoma, sarcoma thigh, maxillary tumour, sarcoma back). Thirteen participants (four patients, four Ghana clinicians, and five UK clinicians) completed feedback on the 3D MDT. Outcome measures were rated highly with satisfaction 84.31/100, perceived benefit 4.54/5, overall quality 127.3/147 (Telehealth Usability Questionnaire), and usability 83.2/100 (System Usability Scale). These data show close alignment with that previously published on high-income countries. CONCLUSIONS: This novel technology has the potential to enhance the delivery of overseas surgical visits to low-to-middle-income countries, by improving planning, informed discussion with patients, expert consensus on complex cases, and fostering engagement with professionals who may be thousands of miles away. This is the first demonstration that real-time 3D Telemedicine can both work, and enhance care within an international MDT clinic, and may thus enable change in the approach to overseas surgical collaborations.


Assuntos
Neoplasias Maxilares , Sarcoma , Telemedicina , Humanos , Gana , Hospitais de Ensino
19.
Digit Health ; 9: 20552076231152163, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36714543

RESUMO

Objective: Digital health technology is valued as a tool to provide person-centred care and improve health outcomes amongst people with cancer and their family caregivers. Although the evidence to date shows encouraging effectiveness, there is limited knowledge regarding the lived experience and personal meaning of using supportive technology during cancer treatment. The aim of this study was to explore the lived experiences of people with colorectal cancer receiving chemotherapy using digital health symptom management technology and their family caregivers. Methods: A longitudinal and multi-perspective interpretative phenomenological analytical approach was adopted including three people with newly diagnosed colorectal cancer and four family caregivers. Findings: Three superordinate themes and related subthemes were identified. The first theme (The 3 Cs of symptom management technology) centred on the continuity of care that participants felt while using the technology. The second theme (Digital health technology as a psychosocial support) offered insights into the psychological benefits using technology incurred as they navigated their cancer diagnosis including sense of control and psychological safety. The final theme (Impact of digital health technology on family caregivers) details the supportive effect the technology had on family caregivers' role, responsibilities and well-being during the cancer experience. Conclusion: Digital health technology can act as a bridge from uncertainty to an understanding regarding a cancer diagnosis and its treatment. Digital health technology can support peoples' understanding of cancer and enhance self-management practices, while being a psychological support in navigating the uncertain and often worrying period of receiving cancer treatment.

20.
J Laryngol Otol ; 137(12): 1312-1325, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37078528

RESUMO

OBJECTIVE: Digital health tools are increasingly being recognised as effective interventions in monitoring chronic health conditions. This systematic review addressed how digital health is currently utilised in patients with head and neck cancer as an adjunct to care. METHOD: Studies of the development or evaluation of an eHealth, telemedicine or telemonitoring tool were eligible. A narrative synthesis was performed as per Preferred Reporting Items for Systematic Review and Meta-Analyses reporting guidelines. RESULTS: Twenty-nine studies of digital health tools in head and neck cancer were identified. Nine were randomised, controlled trials but most had concern of bias. Fourteen (48 per cent) of the interventions used multiple modes of delivery. The primary digital tool functions are symptom tracking and self-care, prehabilitation and rehabilitation, psychological support, and education, including decision aids. Most tools aimed to support patients during active cancer treatment. CONCLUSION: There are a small number of digital health tools for head and neck cancer patients; however, there is a lack of well-designed randomised, controlled trials to demonstrate effectiveness.


Assuntos
Neoplasias de Cabeça e Pescoço , Humanos , Neoplasias de Cabeça e Pescoço/terapia , Autocuidado
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