RESUMO
OBJECTIVES: Stroke survivors often have unmet physical, psychological and/or social concerns. Patient Concerns Inventories (PCIs) have been developed for other health conditions to address concerns. Our objective was to develop a PCI for stroke care. METHODS: This was a development study, including Modified Delphi study design, with academic and healthcare professionals with stroke care expertise. In Stage 1, a draft Stroke PCI (Version 1a) was created through identifying patient-reported concerns post-stroke from three previous studies and through expert panel discussions using Nominal Group Technique. In Stage 2, Version 1a was sent to 92 academic and healthcare professionals with stroke care expertise. Participants ranked their top 20 Stroke PCI items in order of importance and provided feedback. Rankings were converted into scores, and, with the feedback, used to amend the Stroke PCI. Two further rounds of feedback followed until consensus was reached between participants. A final draft of the Stroke PCI was created. RESULTS: In stage 1, 64 potential Stroke PCI items were generated. In Stage 2, 38 participants (41.3%) responded to the request to rank Stroke PCI items. The three highest ranked items were 'Risk of another stroke', 'Walking', 'Recovery'. After three rounds of feedback and amendments, the final draft of the Stroke PCI consisted of 53 items. CONCLUSIONS: A Stroke PCI has been developed using patient-reported concerns in previous studies and input from academic and healthcare professionals. Future work will involve gathering further feedback on the tool and exploring its acceptability and usability in a pilot study.
Assuntos
Intervenção Coronária Percutânea , Qualidade de Vida , Humanos , Técnica Delphi , Projetos Piloto , PacientesRESUMO
PURPOSE: Patient Concerns Inventory (PCI) prompt lists are designed to capture health needs and concerns that matter most to patients. A head and neck cancer (HNC)-specific PCI was initially developed for follow-up after treatment with curative intent (PCI-HNC follow-up). Patients with HNC receiving palliative treatment (PT) may have different symptoms and concerns to discuss with the healthcare professionals. The aim of this study is to establish recommendations for a PCI-HNC-PT prompt list. METHODS: The process leading to the recommendations for the PCI-HNC-PT was a four-step sequential qualitative study. First, semi-structured interviews among patients with HNC receiving treatment with palliative intent were conducted based on the original PCI-HNC follow-up prompt list. Second, a multidisciplinary reviewing panel revised the PCI-HNC follow-up based on the findings from the patient's interviews. Third, a focus group interview (FGI) with specialized oncology nurses was conducted based on the revised PCI-HNC follow-up. Fourth, the results of the patient and FGI interviews were combined and re-assessed by the multidisciplinary reviewing panel leading to a consensus on the selection and recommendation of items for the final PCI-HNC-PT. The think aloud method was used in patient and FGI interviews to establish face and content validity. RESULTS: Ten patients receiving palliative systemic treatment for HNC were included and interviewed. Face validity and content validity for the PCI list were demonstrated. Patients independently expressed that their concerns and needs fluctuate and change over time and welcomed the possibility of being supported by a PCI prompt list. The patients estimated a PCI prompt list to be relevant or very relevant. No items were found to be unacceptable or inappropriate but were revised to be more precise in their description. Additional items were suggested from the need to be actively involved in their treatment and care. The FGI led to the knowledge that the nurses did not have a systematic approach to communicate on symptoms. The nurses highlighted that the PCI prompt list is likely helpful for addressing symptoms, needs, and concerns that the nurses themselves would not immediately inquire about. The multidisciplinary reviewing panel came to a consensus on items and concerns recommended for the PCI-HNC-PT. CONCLUSION: The idea of a PCI prompt list was welcomed by patients with HNC receiving palliative treatment. The original PCI-HNC follow-up was adapted and has led to the recommendations of items and concerns for a PCI-HNC-PT prompt list. The next phase will be to feasibility test the PCI-HNC-PT in the clinical setting. The PCI prompt list has the potential to help facilitate the concerns and needs of the patients during the palliative treatment trajectory and thereby have the potential to strengthen a person-centered approach.
Assuntos
Neoplasias de Cabeça e Pescoço , Cuidados Paliativos , Humanos , Neoplasias de Cabeça e Pescoço/terapia , Oncologia , Grupos Focais , Pesquisa QualitativaRESUMO
INTRODUCTION: The Patient Concerns Inventory (PCI) is a condition specific prompt list that was initially developed for head and neck cancer (HNC) and is referred to as the PCI-HN. There have been numerous publications regarding the PCI-HN, since it was first published in 2009. To date, there has not been a review of its development, validation and clinical implications. A collation of relevant papers into key sections allows multidisciplinary teams and researchers to have an overview of the PCI-HN's background, evaluation and utility. This is essential if colleagues are to have confidence in the tool and be able to reflect on how to optimise its use in clinical practice. METHODS: Five search engines were used: EMBASE, Medline, PubMed, CINAHL and Handle-on-QOL for the specific term 'Patient Concerns Inventory' up to and including 1st February 2022. In addition, an accumulation of PCI-HN data of 507 HNC patients was drawn from previous studies in Liverpool and Leeds between 2007 and 2020 and was analysed specifically for this paper. RESULTS: 54 papers relating to the PCI-HN were identified. The review is structured into eight sections: (1) What is the PCI-HN and how does it work; (2) Feasibility and acceptability; (3) Psychometrics; (4) Items selected and frequency (5) Associations with Health-Related Quality of Life (HRQOL) and casemix; (6) Other observational studies; (7) Randomised trial evaluation; (8) General discussion and further research. CONCLUSIONS: As the term PCI is quite ubiquitous and produces many hits when searching the literature, this review provides a very concise and convenient historical context for the PCI-HN and collates the current literature.
Assuntos
Neoplasias de Cabeça e Pescoço , Qualidade de Vida , Humanos , Oncologia , Pescoço , Inquéritos e QuestionáriosRESUMO
PURPOSE: The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discuss issues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinics for one year after treatment on health-related QOL (HRQOL). METHODS: A pragmatic cluster preference randomised control trial with 15 consultants, 8 'using' and 7 'not using' the PCI intervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible. RESULTS: Consultants saw a median (inter-quartile range) 16 (13-26) patients, with 140 PCI and 148 control patients. Of the pre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) social-emotional subscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after full adjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primary outcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (- 2.9%, 12.9%) but without achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultant level also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selected decreased over time. CONCLUSION: This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost means of benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.
Assuntos
Neoplasias de Cabeça e Pescoço , Qualidade de Vida , Emoções , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
The coronavirus disease 2019 pandemic has resulted in new challenges for clinicians, head and neck cancer (HNC) patients and carers. There is evidence that the current crisis is affecting the management of HNC patients. Most healthcare systems have introduced remote consultations to decrease the risk of coronavirus infection to patients, carers and clinicians. At present, HNC patients may be anxious and due to logistical issues, may not be adequately prepared for their treatment. To ensure that patients have a thorough understanding of their treatment and expected outcome during the current COVID-19 crisis there may be merit in the use of the HaNC-AD PCI.
Assuntos
Infecções por Coronavirus/prevenção & controle , Coronavirus , Neoplasias de Cabeça e Pescoço/diagnóstico , Neoplasias de Cabeça e Pescoço/terapia , Necessidades e Demandas de Serviços de Saúde , Pandemias/prevenção & controle , Pneumonia Viral/prevenção & controle , Betacoronavirus , COVID-19 , Lista de Checagem , Infecções por Coronavirus/epidemiologia , Humanos , Pneumonia Viral/epidemiologia , Qualidade de Vida , SARS-CoV-2RESUMO
PURPOSE: The main aim of this paper is to present baseline demographic and clinical characteristics and HRQOL in the two groups of the Patient Concerns Inventory (PCI) trial. The baseline PCI data will also be described. METHODS: This is a pragmatic cluster preference randomised control trial with 15 consultant clusters from two sites either 'using' (n = 8) or 'not using' (n = 7) the PCI at a clinic for all of their trial patients. The PCI is a 56-item prompt list that helps patients raise concerns that otherwise might be missed. Eligibility was head and neck cancer patients treated with curative intent (all sites, stage of disease, treatments). RESULTS: From 511 patients first identified as eligible when screening for the multi-disciplinary tumour board meetings, 288 attended a first routine outpatient baseline study clinic after completion of their treatment, median (IQR) of 103 (71-162) days. At baseline, the two trial groups were similar in demographic and clinical characteristics as well as in HRQOL measures apart from differences in tumour location, tumour staging and mode of treatment. These exceptions were cluster (consultant) related to Maxillofacial and ENT consultants seeing different types of cases. Consultation times were similar, with PCI group times taking about 1 min longer on average (95% CL for the difference between means was from - 0.7 to + 2.2 min). CONCLUSION: Using the PCI in routine post-treatment head and neck cancer clinics do not elongate consultations. Recruitment has finished but 12-month follow-up is still ongoing.
Assuntos
Neoplasias de Cabeça e Pescoço , Qualidade de Vida , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Estadiamento de Neoplasias , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The consequences of treatment for Head and Neck cancer (HNC) patients has profound detrimental impacts such as impaired QOL, emotional distress, delayed recovery and frequent use of healthcare. The aim of this trial is to determine if the routine use of the Patients Concerns Inventory (PCI) package in review clinics during the first year following treatment can improve overall quality of life, reduce the social-emotional impact of cancer and reduce levels of distress. Furthermore, we aim to describe the economic costs and benefits of using the PCI. METHODS: This will be a cluster preference randomised control trial with consultants either 'using' or 'not using' the PCI package at clinic. It will involve two centres Leeds and Liverpool. 416 eligible patients from at least 10 consultant clusters are required to show a clinically meaningful difference in the primary outcome. The primary outcome is the percentage of participants with less than good overall quality of life at the final one-year clinic as measured by the University of Washington QOL questionnaire version 4 (UWQOLv4). Secondary outcomes at one-year are the mean social-emotional subscale (UWQOLv4) score, Distress Thermometer (DT) score ≥ 4, and key health economic measures (QALY-EQ-5D-5 L; CSRI). DISCUSSION: This trial will provide knowledge on the effectiveness of a consultation intervention package based around the PCI used at routine follow-up clinics following treatment of head and neck cancer with curative intent. If this intervention is (cost) effective for patients, the next step will be to promote wider use of this approach as standard care in clinical practice. TRIAL REGISTRATION: 32,382. Clinical Trials Identifier, NCT03086629 . PROTOCOL: Version 3.0, 1st July 2017.
Assuntos
Neoplasias de Cabeça e Pescoço/epidemiologia , Neoplasias de Cabeça e Pescoço/psicologia , Qualidade de Vida , Análise Custo-Benefício , Emoções , Custos de Cuidados de Saúde , Humanos , Garantia da Qualidade dos Cuidados de Saúde , Estresse PsicológicoRESUMO
A question prompt list (QPL) is a simple and inexpensive communication tool used to facilitate patient participation in medical consultations. The QPL is composed of a structured list of questions and has been shown to be an effective way of helping ensure patients' individual information needs are appropriately met. This intervention has been investigated in a variety of settings but not specifically head and neck cancer (HNC). The aim of this paper was to perform a narrative review of literature reporting the use of a QPL for oncology patients and to draw comparison to the Patient Concerns Inventory (PCI-HN). The databases Scopus, PubMed and MEDLINE were searched using the key terms 'question prompt list', 'question prompt sheet', 'cancer' and 'oncology'. Of 98 articles hand searched, 30 of which were found to meet all inclusion criteria, and described in a tabulated summary. The studies concluded that the QPL was an effective intervention, enabling active patient participation in medical consultations. The PCI-HN is specific for HNC and differs from many QPLs, which are more general cancer tools. The QPL approach should prove to be a useful intervention for HNC sufferers, however further research into the clinical utility is required.
Assuntos
Neoplasias/terapia , Participação do Paciente/métodos , Inquéritos e Questionários , Lista de Checagem , Comunicação , Sinais (Psicologia) , Humanos , Oncologia/métodos , Neoplasias/psicologia , Educação de Pacientes como Assunto/métodos , Relações Médico-PacienteRESUMO
Oral cancer has a higher incidence in the lower social strata, and these patients are less likely to engage in supportive interventions and report a poorer quality of life (QoL). The aim of this paper is to compare the Patient Concerns Inventory (PCI) responses across social groups attending routine oral cancer follow-up clinics with particular focus on the deprivation lower quartile. The PCI package is completed by patients as part of their routine review consultation with SNR. Patients were those diagnosed between 2008 and 2012. Deprivation was stratified using the IMD 2010 from postcode. Of the 106 eligible patients, 85 % used the PCI. Just over half (54 %) were living in the most deprived quartile, with two-thirds (68 %) of males in the most deprived quartile, compared with 35 % of females (p = 0.004). In regard to number and type of PCI items selected by patients at their first PCI clinic, there were no notable differences in respect of IMD classification. The two commonest concerns were fear of recurrence (43 %) and sore mouth (43 %). The most deprived quartile reported significant problems in regard to mood (p = 0.004) and recreation (p = 0.02), and a non-significant trend (36 vs 18 %, p = 0.09) in stating their overall QoL as being less than good. It is possible to identify the concerns of patients from lower socioeconomic strata as part of routine follow-up clinics. This allows for targeted multi-professional intervention and supports to improve the outcome in this hard to reach group.
Assuntos
Carcinoma de Células Escamosas/epidemiologia , Neoplasias Bucais/epidemiologia , Qualidade de Vida , Fatores Socioeconômicos , Idoso , Idoso de 80 Anos ou mais , Consumo de Bebidas Alcoólicas/epidemiologia , Instituições de Assistência Ambulatorial , Carcinoma de Células Escamosas/terapia , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias Bucais/terapia , Áreas de Pobreza , Fumar/epidemiologia , Reino Unido/epidemiologiaRESUMO
The aim of this study was to identify the distress, unmet needs and concerns of head and neck cancer (HNC) survivors in the first 5 years after treatment. Two hundred and eighty HNC survivors from three Scottish health boards responded to a cross-sectional postal survey in 2011. Questionnaires included the Distress Thermometer, Patient Concerns Inventory (PCI) and an adapted version of the PCI to measure unmet needs. One-third of the survivors had moderate or severe levels of distress, and 74% had at least one unmet need. The most common concerns and unmet needs included oral and eating problems, fear of recurrence and fatigue. Multivariate analysis revealed that being younger, out of work (not retired), ever having had a feeding tube fitted, having a greater number of comorbidities and living alone were associated with higher levels of distress, concerns and unmet needs. The diversity of concerns and unmet needs identified in this study highlights the importance of holistic needs assessment as part of follow-up care for HNC survivors with tailoring of support for particular concerns. Specific information resources and self-management strategies are required to help HNC survivors with the practical and functional consequences of HNC treatment.
Assuntos
Neoplasias de Cabeça e Pescoço/psicologia , Necessidades e Demandas de Serviços de Saúde , Avaliação das Necessidades , Estresse Psicológico/etiologia , Sobreviventes/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Satisfação do Paciente , Qualidade de Vida , Fatores de Risco , Escócia , Apoio Social , Inquéritos e QuestionáriosRESUMO
Head and Neck (H&N) cancer treatment can have a major detrimental impact on patient lives, and these issues can go unrecognised and be inadequately addressed. The aim of this paper is to compare the Patient Concerns Inventory (PCI) responses across age groups attending routine H&N cancer follow-up clinics with particular focus on the elderly (75 years or older). The PCI-HN data were obtained from patients attending follow-up clinics between August 2007 and January 2013. The groups for comparison were: <55 (n = 105), 55-64 (n = 170), 65-69 (n = 64), 70-74 (n = 68), and ≥75 (n = 76), the median in this last group of 79.1 years. Regarding quality of life (QoL) on first completing the PCI the elderly reported better anxiety and mood, higher social-emotional subscale scores and better overall QoL. On the PCI, being elderly did not seem to affect the total numbers of items selected, though fewer items were selected from the psychological, emotional and spiritual well-being domain, and in particular the item about fear of recurrence. Dentist and surgeon were the two health professionals most often selected that patients wished to see or be referred on to. It is possible to recognise concerns in routine clinical care, thus allowing the opportunity for intervention and support to improve the outcome for the elderly.
Assuntos
Neoplasias de Cabeça e Pescoço/psicologia , Complicações Pós-Operatórias/psicologia , Idoso , Idoso de 80 Anos ou mais , Ansiedade/etiologia , Emoções , Feminino , Seguimentos , Neoplasias de Cabeça e Pescoço/complicações , Humanos , Masculino , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/psicologia , Qualidade de VidaRESUMO
The patient concerns inventory (PCI) allows patients to highlight the issues they would like to discuss at their outpatient consultation. It improves patient-clinician communication and has proven benefits. While the PCI is effective, patient experiences could be improved with better access to it and the ability to more easily and frequently express their concerns. This, of course, is in the context of ever-increasing healthcare challenges and limited resources. Use of conversational artificial intelligence (CAI) represents an opportunity to improve information flow between patients and professionals remote from the consultation. This paper highlights the potential for CAI to provide an 'always-on' platform, using natural language interface technology and based on the PCI, which patients can access via their mobile devices. We also discuss potential pitfalls and concerns, along with outlining a current clinical trial assessing, in the first instance, usability of this technology.
Assuntos
Inteligência Artificial , Comunicação , Humanos , Relações Médico-PacienteRESUMO
Head and neck cancer has a significant impact on a patient's health related quality of life (HRQOL). The head and neck specific Patient Concerns Inventory (PCI-HN) has been utilised to enhance doctor-patient dialogue in routine consultations. To date there has been no formal training for oral and maxillofacial surgery (OMFS) surgical trainees in the use of the PCI-HN in consultations. The aim of the study was to evaluate training for OMFS surgical trainees in the use of the PCI-HN, using simulated follow-up HNC consultations, in order to improve doctor-patient communication skills. MATERIAL AND METHODS: Ten oral and maxillofacial surgical trainees completed actor simulated HNC consultations before and after training. A study-specific mark scheme was developed based on the ComOn-Coaching rating scales and used to score the doctor-patient interaction. A group debrief afterwards explored the trainee's experiences of the training and consultations. RESULTS: All trainees showed an improvement in doctor-patient communication scores following their training. Overall, the six participants who were Specialty registrars, year 3 (ST3) or above, scored higher, than the four Specialty registrars, year 1-2 (ST1-2). The scores were higher if fewer PCI-HN items were discussed (3-4). The most frequently avoided PCI-HN items were intimacy and relationships. The trainees considered that their training was useful for organising their consultations and for providing holistic care. CONCLUSION: Although training improved surgeon-patient communication, further evaluation is required with a larger number of trainees and actual consultations in clinic.
Assuntos
Neoplasias de Cabeça e Pescoço , Intervenção Coronária Percutânea , Humanos , Qualidade de Vida , Comunicação , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: The aim of this paper is to report the pattern of follow-up that occurred for a cohort of head and neck cancer (HNC) patients across two large centres in the UK (Aintree and Leeds), as a consequence of the COVID-19 pandemic. METHODS: Patients had been treated for HNC with curative intent between April 2017 and October 2019 by 14 oral and maxillofacial (OMFS) and ear nose and throat (ENT) oncology surgeons in the Patient Concerns Inventory intervention trial. In October 2020, hospital records were reviewed, and information collected on the timing and mode (face-to-face/telephone/video) of follow-up consultations. In addition, recurrence, second primary tumours and deaths were recorded. RESULTS: At the start of 'lockdown', 212 members of the cohort were known to be alive. During the post-lockdown period (follow-up appointment data comprised 5 months in Aintree and 7 months in Leeds) 7 died and 13 were identified as palliative/recurrence/new primary/metastases ('new event'). In Aintree, the first ENT/OMFS consultations after lockdown were 51 (67%) telephone and 25 (33%) face-to-face appointments. In Leeds, 46 (78%) consultations were by telephone and 13 (22%) were face-to-face. The second ENT/OMFS consultations post lockdown included 11 (44%) telephone and 14 (56%) face-to-face in Aintree, and 21 (75%) telephone and 7 (25%) face-to-face in Leeds. CONCLUSIONS: These data suggest that clinicians favoured remote consultations. Variations in practice were observed but reached a point of a 'hybrid follow-up approach' that included both face-to-face and remote consultations. With the emergence of telemedicine, clinicians may consider a follow-up model tailored to risk stratification. The development of the mode of such a consultation model needs further evaluation.
Assuntos
COVID-19 , Neoplasias de Cabeça e Pescoço , Consulta Remota , Humanos , COVID-19/epidemiologia , Pandemias , Seguimentos , Controle de Doenças Transmissíveis , Neoplasias de Cabeça e Pescoço/cirurgia , Encaminhamento e Consulta , Telefone , Reino Unido/epidemiologiaRESUMO
INTRODUCTION: During clinical follow-up it can be difficult to identify those head and neck cancer (HNC) patients who are coping poorly and could benefit from additional support. Health-related quality of life (HRQOL) questionnaires and prompt lists provide a means by which patients can express their perceived outcomes and raise concerns. The first aim of this secondary analysis following a randomized trial was to explore which patient characteristics, at around 3 months following treatment completion (baseline), best predict HRQOL 12 months later. The second aim was to attempt to ascertain which patients were most likely to benefit from using prompt list. METHODS: Cluster-controlled pragmatic trial data were analyzed. HRQOL was measured by the University of Washington Quality of life questionnaire (UW-QOLv4). The prompt list was the Patient Concerns Inventory (PCI-HN). RESULTS: The trial involved 15 eligible consultants and a median (inter-quartile range) of 16 (13-26) primary HNC patients per consultant, with 140 PCI patients and 148 controls. Baseline HRQOL was the dominant predictor of 12-month HRQOL with other predictors related to social, financial, and lifestyle characteristics as well as clinical stage and treatment. Although formal statistical tests for interaction were non-significant the trend in analyses over a range of outcomes suggested that patients with worse baseline HRQOL could benefit more from the PCI-HN. DISCUSSION: HRQOL early post-treatment is a key predictor of longer-term outcome. Measuring and using HRQOL and the PCI-HN are not only surrogates for predicting HRQOL at 15 months post-treatment, but also tools to help guide interventions.
Assuntos
Neoplasias de Cabeça e Pescoço , Intervenção Coronária Percutânea , Ensaios Clínicos Controlados como Assunto , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Estilo de Vida , Ensaios Clínicos Pragmáticos como Assunto , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Randomised clinical trials are an essential component for robust clinical evaluation. They are expensive to deliver but can fail to achieve the required outcomes. This paper reports details of trial recruitment in a head and neck Patient Concerns Inventory intervention trial from two UK head and neck tertiary centres. MATERIALS AND METHODS: Data were collected for a pragmatic cluster preference randomised control trial with 15 consultants recruiting patients treated with curative intent after a diagnosis of head and neck cancer (all sites, disease stages, treatments). Ethical approval was given to report on those not recruited by the following characteristics: trial site, trial arm, age, sex, tumour site, overall stage, index of multiple deprivation quintile, timeframe. RESULTS: There were 368 patients approached who remained eligible and 80 (22%) declined to participate. Logistic regression suggested that age group (p = 0.008) and index of multiple deprivation quintile group (p = 0.003) were independent predictors of refusal. CONCLUSIONS: Although recruitment to the trial was very good, it raised the issue of lower recruitment in the more deprived older group and lower social economic strata. Innovative ways need to be explored to facilitate the 'hard to reach' group contributing to, and benefiting from, clinical trials.
Assuntos
Neoplasias de Cabeça e Pescoço , Recusa de Participação , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Qualidade de Vida , Reino UnidoRESUMO
BACKGROUND: The purpose of this paper is to map the number of concerns on the dimensions in Head and Neck Patient Concerns Inventory (PCI) on to the health utility (HU) index scores on Euroqol-Five Dimensions-Five levels {EQ-5D-5L) . METHODS: This is a cross-sectional survey conducted in patients who have completed their treatment. Four candidate models were considered, three based on ordinary least squares regression (OLS) and one two-parts model. RESULTS: A reduced OLS model based on 'Physical and functional', 'Treatment-related', and 'Psychological, emotional and spiritual well-being' domains was found best on the estimation sample. This was validated externally on a separate sample. CONCLUSIONS: This is the first study that mapped a non-QOL tool to generate HU scores on EQ-5D-5L. The proposed mapping algorithm can estimate the cost-utility in economic evaluation studies when HU scores are not directly available. The algorithm will be best suited for studies in low-middle income countries.
Assuntos
Neoplasias de Cabeça e Pescoço , Qualidade de Vida , Análise Custo-Benefício , Estudos Transversais , Humanos , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
The number of patients presenting with osteoradionecrosis (ORN) is likely to increase in future and health related quality of life (HRQOL) is a key outcome. This study aimed to report patient concerns and HRQOL in an osteoradionecrosis cohort over 12 years. Patients attended routine follow-up clinics between 2008 to 2020, where patient reported outcome (PRO) assessment was used before consultations as standard practice. The two PROs were the Patient Concerns Inventory (PCI) and the University of Washington quality of life questionnaire (UW-QOL v4). The study sample comprised 109 patients with ORN seen in 445 clinics when PCI and UW-QOL were used. At clinic, patients were in one of six ORN states: before ORN (26 with data), at diagnosis (12), and following treatment either improved (27), progressed (46), stable (63) or resolved (37). Worst HRQOL outcomes were reported in the progressive group with 50% reporting overall QOL as less than good. Pain was a major dysfunction (63%) as was physical and social-emotional functioning and this group reported many PCI issues, median (IQR) 7 (4-11). Kaplan-Meier estimates of survival with 95% CI after diagnosis with ORN were 96% (90-99%) at 12 months, 89% (81-94%) at 24 months and 73% (61-82%) at 60 months. This study indicates that ORN is a chronic condition with long-term survivorship consequences. More data through cohort studies and trials are needed to assist in decision making for individual patients.
Assuntos
Neoplasias de Cabeça e Pescoço , Osteorradionecrose , Neoplasias de Cabeça e Pescoço/radioterapia , Humanos , Avaliação de Resultados da Assistência ao Paciente , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
Planning discharge from hospital following microvascular free-tissue surgery can be complex and challenging. Planning involves the patient, carers, and multiple health professionals. Poor communication and expectations can delay discharge or give a suboptimal discharge process. It was hypothesised that prompt-list modelled along the principals of the Patient Concerns Inventory (PCI) could be help in discharge planning. The aim of this study was to define the items and format of a PCI-Ward Discharge (PCI-WD) and undertake a small pilot. Items appropriate for the PCI-WD were formulated through discussion with patients, carers, ward staff, Head and Neck Clinical Nurse Specialists, and clinicians. The pilot took place over three months from December 2019 through to February 2020. Audit approval was given by the hospital Audit Department. The PCI-WD comprises 43 items. Items from existing PCIs for use at diagnosis and follow-up consultations were reduced in number and 38 new or modified items added; six treatment related, five social care and social well-being, four psychological, emotional, and spiritual well-being, seven physical and functional well-being, and 16 discharge related. The pilot involved 14 free-tissue transfer patients, seven male, seven female, with an age range of 57 to 87 and a mean age of 72. Eight PCI-WD were returned. PCI-WD items identified most frequently were 'surgery site other than head/neck', 'when do I come back to hospital', 'dental check-up/oral health care' and 'diet/eating'. Early findings suggest that PCI-WD could be a useful tool in aiding the discharge process. Further evaluation is required.
Assuntos
Neoplasias de Cabeça e Pescoço , Procedimentos de Cirurgia Plástica , Feminino , Neoplasias de Cabeça e Pescoço/cirurgia , Hospitais , Humanos , Masculino , Alta do Paciente , Qualidade de VidaRESUMO
Background: Fear of cancer recurrence (FCR) is recognized as a common concern for patients with head and neck cancer (HNC). The aim of this study is to describe in greater detail the demographic and clinical characteristics of HCN patients who indicate a high level of FCR in their review consultation. Methods: A pragmatic cluster-controlled trial was conducted between January 2017 and December 2018 at two UK HNC centers (Leeds and Liverpool) to test the efficacy of a prompt tool called the Patient Concerns Inventory (PCI). Patients completed the PCI and the UW-QOLv4 which included a single 5 category rating of FCR. Secondary statistical analyses focused on variables associated with high FCR. Results: Two hundred and eighty-eight trial patients were recruited in this trial. At a median of 194 days after diagnosis and 103 days after the end of treatment 8% stated (n = 24) "I get a lot of fears of recurrence and these can really preoccupy my thoughts" and 3% (n = 8) "I am fearful all the time that my cancer might return, and I struggle with this." Thus, 11% (n = 32) responded in the worst two categories, 95% Confidence interval 7.7-15.3% for high FCR. Stepwise logistic regression resulted in female gender (p < 0.001), age (p = 0.007), and receiving financial benefits (p = 0.01) as independent predictors. Conclusions: Around one in ten HNC patients attending routine outpatient follow-up consultations report high FCR, however for female patients under the age of 55 the rate was one in three. This group requires specialist attention and could be the focus of a multicenter intervention trial.