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1.
Cancer ; 2024 Aug 04.
Artículo en Inglés | MEDLINE | ID: mdl-39097814

RESUMEN

BACKGROUND: Social isolation and social connectedness are health determinants and aspects of social well-being with strong associations with psychological distress. This study evaluated relationships among social isolation, social connectedness, and psychological distress (i.e., depression, anxiety) over 1 year in young adult (YA) cancer survivors 18-39 years old. METHODS: Participants were YAs in a large cohort study that completed questionnaires every 2 months for 1 year. Social isolation, aspects of social connectedness (i.e., companionship, emotional support, instrumental support, and informational support), depression, and anxiety were assessed with Patient-Reported Outcomes Measurement Information System short form measures. Mixed-effect models were used to evaluate changes over time. Confirmatory factor analysis and multilevel structural equation modeling were used to define social connectedness as a latent construct and determine whether relationships between social isolation and psychological distress were mediated by social connectedness. RESULTS: Participants (N = 304) were mean (M) = 33.5 years old (SD = 4.7) and M = 4.5 years (SD = 3.5) post-initial cancer diagnosis. Most participants were female (67.4%) and non-Hispanic White (68.4%). Average scores for social well-being and psychological distress were within normative ranges and did not change (p values >.05). However, large proportions of participants reported at least mild social isolation (27%-30%), depressive symptoms (36%-37%), and symptoms of anxiety (49%-51%) at each time point. Across participants, more social isolation was related to less social connectedness (p values <.001), more depressive symptoms (p < .001), and more symptoms of anxiety (p < .001). Social connectedness mediated the relationship between social isolation and depression (p = .004), but not anxiety (p > .05). CONCLUSIONS: Social isolation and connectedness could be intervention targets for reducing depression among YA cancer survivors.

2.
Occup Ther Health Care ; 38(2): 347-363, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37302410

RESUMEN

Occupational therapy practitioners are uniquely positioned to address the needs of cancer survivors. This study aimed to understand the complex needs of survivors using The Canadian Occupational Performance Measure and in-depth interviewing. A convergent, mixed methods approach was utilized with a purposive sample of 30 cancer survivors. The results indicate that while the COPM can be a practical tool to address basic occupational performance problems, the in-depth interviews exposed these challenges are intricately connected to identity, relationships, and roles. Implications for occupational therapy practitioners include a critical approach to evaluation and interventions to capture the complex needs of survivors.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Terapia Ocupacional , Humanos , Actividades Cotidianas , Canadá
3.
Cancer ; 129(19): 2946-2965, 2023 10 01.
Artículo en Inglés | MEDLINE | ID: mdl-37489837

RESUMEN

BACKGROUND: Social isolation and connectedness are social determinants of health that have demonstrated effects on cancer-related outcomes. These constructs have been systematically evaluated among pediatric and older adult cancer populations. In this review, the authors evaluated the prevalence, correlates, and psychosocial implications of social isolation and connectedness among young adult (YA) cancer survivors aged 18-39 years. METHODS: Peer-reviewed articles published in English before June 2021 were identified from database searches and included articles' reference lists according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Included articles described studies that assessed social isolation and/or connectedness among YA cancer survivors. RESULTS: In total, 5094 unique records were identified; 4143 were excluded after title/abstract screening, and 907 were excluded after full-text review. Forty-four articles were included. Few studies used validated measures or directly assessed social isolation or connectedness. Social isolation was similarly prevalent among YAs and older cancer survivors and noncancer populations. Demographic, clinical, and behavioral risk and protective factors for social isolation were identified. Social isolation was related to worse psychological well-being, whereas social connectedness was often, but not always, related to better psychological well-being. CONCLUSIONS: This growing literature underscores the relevance of social isolation and connectedness as important health determinants among YA cancer survivors. The identified risk and protective factors can identify YAs who especially may benefit from screening for social isolation. Future studies are needed that directly, reliably, and validly evaluate social isolation and connectedness to inform the development of interventions to decrease isolation and increase connectedness.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Adulto Joven , Niño , Anciano , Aislamiento Social/psicología , Neoplasias/psicología
4.
J Psychosoc Oncol ; : 1-17, 2023 Sep 12.
Artículo en Inglés | MEDLINE | ID: mdl-37698184

RESUMEN

Objective: Despite more women living with metastatic breast cancer (MBC), this population is underrepresented in cancer survivorship research. Few studies have assessed how women with MBC cope with their cancer experience. This qualitative study describes the coping strategies and psychosocial resources utilized by women living with MBC.Methods: Twenty-two women with MBC participated in four focus groups. Transcripts were analyzed using a general inductive approach. Codes derived from participants' responses were subsequently condensed into themes.Results: We identified 12 coping strategies and psychosocial resources and grouped them into five themes: Behavioral Coping Strategies (i.e. stress management, active coping and planning); Cognitive Coping Strategies and Psychological Resources (i.e. cognitive reappraisal, optimism, mindfulness, positive thinking, and religious coping); Existential Approach-Oriented Coping (i.e. acceptance, values-based living, and identity integration); Avoidance (i.e. avoidant coping); and Interpersonal Resources and Seeking Social Support (i.e. social support).Conclusions: Women living with MBC utilize several engagement and disengagement coping strategies, as well as intrapersonal and interpersonal resources. This study provides useful perspectives of women living with MBC that may inform the development of psychosocial interventions. Further research is needed to assess coping strategies and psychosocial resources across different subgroups of MBC patients and determine their impact on cancer outcomes.

5.
Psychooncology ; 31(8): 1354-1364, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35416372

RESUMEN

OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.


Asunto(s)
COVID-19 , Supervivientes de Cáncer , Neoplasias , Adolescente , Supervivientes de Cáncer/psicología , Cuidadores/psicología , Estrés Financiero , Humanos , Neoplasias/psicología , Neoplasias/terapia , Adulto Joven
6.
Int J Behav Med ; 29(5): 676-684, 2022 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-35048316

RESUMEN

BACKGROUND: This was a secondary analysis of a pilot randomized controlled trial (RCT) of mindfulness-based stress reduction (MBSR) among young adult (YA) survivors of cancer, which showed preliminary evidence for improving psychosocial outcomes. Secondary outcomes assessed were the feasibility of collecting biological data from YAs and preliminary effects of MBSR on markers of inflammation and cardiovascular function. METHOD: Participants were randomized to 8-week MBSR or a waitlist control condition. Participants provided whole blood spot samples for analysis of C-reactive protein (CRP) and interleukin (IL)-6 as well as blood pressure data in-person at baseline and 16-week follow-up. Feasibility was assessed with rates of providing biological data. Linear mixed effects modeling was used to evaluate preliminary effects of MBSR on inflammatory markers and blood pressure over time. RESULTS: Of 126 total participants enrolled, 77% provided biological data at baseline (n = 48/67 MBSR, n = 49/59 control). At 16 weeks, 97% of the 76 retained participants provided follow-up biological data (n = 34/35 MBSR, n = 40/41 control). Relative to the control group, MBSR was associated with decreased systolic blood pressure (p = 0.042, effect sizes (ES) = 0.45) and decreased diastolic blood pressure (p = 0.017, ES = 0.64). There were no changes in CRP or IL-6. CONCLUSION: This was the first study to explore the feasibility of collecting biological data from YA survivors of cancer and assess preliminary effects of MBSR on inflammatory and cardiovascular markers in an RCT. Minimally invasive biological data collection methods were feasible. Results provide preliminary evidence for the role of MBSR in improving cardiovascular outcomes in this population, and results should be replicated.


Asunto(s)
Atención Plena , Neoplasias , Biomarcadores , Presión Sanguínea , Proteína C-Reactiva , Humanos , Interleucina-6 , Atención Plena/métodos , Neoplasias/terapia , Proyectos Piloto , Estrés Psicológico/psicología , Sobrevivientes/psicología , Resultado del Tratamiento , Adulto Joven
7.
Psychooncology ; 30(8): 1383-1392, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-33843104

RESUMEN

OBJECTIVE: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. METHODS: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. RESULTS: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. CONCLUSIONS: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.


Asunto(s)
Preservación de la Fertilidad , Infertilidad , Neoplasias , Adolescente , Comunicación , Humanos , Sobrevivientes , Adulto Joven
8.
Qual Health Res ; 29(7): 1056-1064, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-30862260

RESUMEN

There are 56.7 million people with disabilities (PWD) living in the United States; yet, PWD are significantly underrepresented in health research. Even when researchers purposively seek to include PWD in studies, challenges emerge related to recruitment and retention, leading to inadequate representation and surface understandings of this population. This in turn contributes to the perpetuation of implicit and explicit health disparities that are already experienced by this population. Grounded within a qualitative, community-based participatory health research framework, we highlight challenges associated with recruiting and retaining PWD in health research, including a critical analysis of the research enterprise structure, how this disables accessible research practices for PWD, and leads to continued skepticism among PWD regarding the value of participating in research. Finally, we propose solutions to create and maintain a culture of access and inclusion as well as long-term collaborative and equity-focused partnerships.


Asunto(s)
Personas con Discapacidad , Investigación sobre Servicios de Salud , Selección de Personal , Investigación Participativa Basada en la Comunidad , Disparidades en Atención de Salud , Humanos , Investigación Cualitativa , Estados Unidos
9.
J Urol ; 200(5): 1048-1055, 2018 11.
Artículo en Inglés | MEDLINE | ID: mdl-29852180

RESUMEN

PURPOSE: Shared decision making is recommended in regard to prostate cancer screening. Decision aids may facilitate this process but the impact of decision aids on screening preferences is poorly understood. MATERIALS AND METHODS: In an online survey we randomized a national sample of adults to the online decision aids of 1 of 6 professional societies. We compared survey responses before and after decision aid exposure. The primary outcome was the change in participant likelihood of undergoing or recommending prostate cancer screening on a scale of 1-unlikely to 100-extremely likely. Secondary outcomes included change in participant comfort with prostate cancer screening based on the average of 6, 5-point Likert-scale questions. RESULTS: Median age was 53 years in the 1,336 participants and 50% were men. The randomized groups did not differ significantly by race, age, gender, income, marital status or education level. The likelihood of undergoing or recommending prostate cancer screening decreased from 83 to 78 following decision aid exposure (p <0.001). Reviewing the decision aid from the Centers for Disease Control or the American Academy of Family Physicians did not alter the likelihood (each p >0.2). However, the decision aid from the United States Preventive Services Task Force was associated with the largest decrease in screening preference (-16.0, p <0.001). Participants reported increased comfort (from 3.5 to 4.1 of 5) with the decision making process of prostate cancer screening following exposure to a decision aid (p <0.001). CONCLUSIONS: Exposure to a decision aid decreased the participant likelihood of undergoing or recommending prostate cancer screening and increased comfort with the screening process.


Asunto(s)
Toma de Decisiones Clínicas/métodos , Técnicas de Apoyo para la Decisión , Detección Precoz del Cáncer/estadística & datos numéricos , Tamizaje Masivo/estadística & datos numéricos , Neoplasias de la Próstata/diagnóstico , Anciano , Toma de Decisiones , Detección Precoz del Cáncer/efectos adversos , Detección Precoz del Cáncer/psicología , Femenino , Humanos , Internet , Masculino , Tamizaje Masivo/psicología , Persona de Mediana Edad , Comodidad del Paciente/estadística & datos numéricos , Educación del Paciente como Asunto , Participación del Paciente , Prioridad del Paciente/psicología , Prioridad del Paciente/estadística & datos numéricos , Distribución Aleatoria , Encuestas y Cuestionarios/estadística & datos numéricos , Estados Unidos
11.
J Urol ; 196(5): 1422-1428, 2016 11.
Artículo en Inglés | MEDLINE | ID: mdl-27259651

RESUMEN

PURPOSE: Using patient reported outcomes measures we identified the most informative set of factors associated with quality of life in a large sample of men treated for localized prostate cancer. MATERIALS AND METHODS: We examined relationships with quality of life using FACIT (Functional Assessment of Chronic Illness Therapy). We also hypothesized variables in a sample of men diagnosed with localized prostate cancer who represented different time points since treatment, including less than 12 months in 70, 1 to 3 years in 344, greater than 3 to 5 years in 291 and greater than 5 years in 97. Correlative measures included subscales of MAX-PC (Memorial Anxiety Scale for Prostate Cancer), short forms of PROMIS® and SOMS (Surgical Outcomes Measurement System), TDM-SATS (Treatment Decision-Making Satisfaction Scale) and subscales of the BFI (Big Five Inventory) of personality. RESULTS: Quality of life was significantly associated with hypothesized variables across different time cohorts. In regression models several factors accounted for most of the variability in quality of life scores depending on time since treatment, including 47%, 22%, 29% and 27% at less than 12 months, 1 to 3 years, greater than 3 to 5 years and greater than 5 years, respectively. Upon examining the unique contribution of these variables, treatment decision making satisfaction was the only variable to have a significant and unique contribution to quality of life across all 4 time cohorts (standardized coefficients 0.33, 0.27, 0.31 and 0.49, respectively, p <0.01). In the cohort with 1 to 3 years since treatment erectile function and neurotic personality style also had unique associations with quality of life (standardized coefficients 0.25 and -0.20, respectively). CONCLUSIONS: When considering the short-term and the longer term quality of life of a man after treatment for localized prostate cancer, our findings highlight the importance of treatment decision making satisfaction, erectile function and personality.


Asunto(s)
Toma de Decisiones , Satisfacción del Paciente , Personalidad , Neoplasias de la Próstata/terapia , Calidad de Vida , Sexualidad/fisiología , Humanos , Masculino , Persona de Mediana Edad , Evaluación del Resultado de la Atención al Paciente , Factores de Tiempo
13.
Am J Respir Crit Care Med ; 191(7): 786-95, 2015 Apr 01.
Artículo en Inglés | MEDLINE | ID: mdl-25594886

RESUMEN

RATIONALE: Patient-reported outcome (PRO) measures have been developed to measure symptoms and other aspects of health-related quality of life. OBJECTIVES: The Sarcoidosis Assessment Tool (SAT), a sarcoidosis-specific PRO, was administered in a lung and skin sarcoidosis treatment trial. We explored SAT performance characteristics and correlation with standard clinical measurements to validate it as a useful clinical sarcoidosis-specific PRO. METHODS: The SAT analyses focused on baseline and Week 16 assessments. Besides the SAT, participants underwent clinical and physician assessments plus additional PROs that were used as anchor variables and were compared with the SAT. Reliability was evaluated by using Cronbach α coefficient. Spearman correlation coefficients were used to evaluate the association between SAT scores with clinical and other PRO measures. Changes between assessments in the clinical and PRO "anchor" variables were classified as improved, stable, or worsened. Mean differences between adjacent categories of the known groups and mean changes from the ability to detect change analyses were reviewed for appropriate clinically important difference estimates. MEASUREMENTS AND MAIN RESULTS: Results from 173 patients were analyzed. Each SAT module reflected appropriate anchor variables at baseline and in terms of change. The Cronbach α for each of these modules was at least 0.87. In addition, we successfully established a clinically important difference range for each SAT module. CONCLUSIONS: We demonstrated that the SAT is a reliable and consistent sarcoidosis-specific PRO. It has excellent internal consistency and reliability. A range of clinically important differences has been established for the SAT modules. Clinical trial registered with www.clinicaltrials.gov (NCT 00955279).


Asunto(s)
Pulmón/patología , Evaluación del Resultado de la Atención al Paciente , Sarcoidosis/terapia , Piel/patología , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Autoevaluación (Psicología) , Encuestas y Cuestionarios , Resultado del Tratamiento
15.
Qual Life Res ; 24(3): 575-89, 2015 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-25148759

RESUMEN

PURPOSE: To establish clinically relevant classifications of health outcome scores for four Neuro-QOL measures (lower extremity function, upper extremity function, fatigue, and sleep disturbance). METHODS: We employed a modified educational standard-setting methodology to identify cut-scores for symptom severity. Clinical vignettes were developed to represent graduated levels of symptom severity. A clinician panel and a panel of persons with multiple sclerosis (PwMS) were recruited, and, in separate, 1-day meetings, the panelists identified adjacent vignettes they judged to represent the threshold between two levels of severity for a given domain (e.g., threshold between a vignette that indicated "no problems" with sleep and the adjacent one that represented "mild problems" with sleep). Working independently, each panel (PwMS and clinicians) reached consensus on its recommended thresholds for each of the four targeted measures. Cut-scores were defined as the mean location for each pair of threshold vignettes. RESULTS: PwMS and clinician panels derived identical thresholds for severity levels of lower extremity function and sleep disturbance, but slightly different ones for upper extremity function and fatigue. In every case of divergence, PwMS set higher thresholds for more severe classifications of symptoms (by 0.5 SDs) than did clinicians. CONCLUSIONS: The modified bookmarking method is effective for defining thresholds for symptom severity based on self-reported outcome scores and consensus judgments. Derived cut-scores and severity levels provide an interpretative context for Neuro-QOL scores. Future studies should explore whether these findings can be replicated and evaluate the validity of the classifications compared to external criteria.


Asunto(s)
Fatiga/complicaciones , Esclerosis Múltiple/terapia , Evaluación del Resultado de la Atención al Paciente , Calidad de Vida , Trastornos del Sueño-Vigilia/complicaciones , Adulto , Anciano , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Autoinforme , Sueño , Adulto Joven
16.
Qual Life Res ; 23(1): 89-101, 2014 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-23709098

RESUMEN

PURPOSE: Sarcoidosis is a multisystem disease that commonly affects the lung, eye, skin, and lymphatic systems. Organ function has been a major focus of treatment outcome with less attention given to more subjective impacts, such as health-related quality of life (HRQL). The purpose of this paper is to present a conceptual model of HRQL in sarcoidosis, which was developed through patient and clinician input. METHODS: We surveyed sarcoidosis clinical experts (n = 5) regarding disease-specific symptoms and their impact on their patient's lives. We also conducted three sarcoidosis patient focus groups (n = 22) that reflected major sarcoidosis typologies (lung, skin, and eye). Data were coded and summarized using qualitative methodologies. RESULTS: Clinicians highlighted the following domains as being important (relative frequencies for comments are in parentheses): emotional distress (17%), lung problems (14%), pain (14%), physical limitations (14%), fatigue (10%), social limitations (10%), eye problems (7%), skin problems (7%), sleep disturbance (3%), and constitutional symptoms (3%). Similarly, patients highlighted the following domains: social limitations (14%), skin problems (12%), pain (10%), coping (10%), emotional distress (9%), lung problems (8%), eye problems (7%), negative impact of corticosteroids (7%), physical limitations (6%), fatigue (6%), sleep disturbance (3%), constitutional symptoms (2%), comorbidities (2%), other systems affected (2%), environmental factors (1%), and positive impact of corticosteroids (1%). CONCLUSIONS: Clinician and patient responses overlapped in several domains, including emotional distress, physical and social limitations, and sarcoidosis-specific impacts, such as eye, skin, and lung problems. These findings support the HRQL impact of sarcoidosis and provide the basis for a conceptual model which has the potential to inform new patient-reported outcomes measures for this population.


Asunto(s)
Calidad de Vida , Sarcoidosis/psicología , Perfil de Impacto de Enfermedad , Adulto , Anciano , Enfermedad Crónica/etnología , Enfermedad Crónica/terapia , Competencia Clínica , Comorbilidad , Femenino , Grupos Focales , Humanos , Masculino , Medicina , Persona de Mediana Edad , Modelos Teóricos , Sarcoidosis/etnología , Sarcoidosis/fisiopatología , Resultado del Tratamiento , Estados Unidos , Adulto Joven
17.
Qual Life Res ; 23(4): 1301-13, 2014 May.
Artículo en Inglés | MEDLINE | ID: mdl-24214179

RESUMEN

PURPOSE: Sarcoidosis is a multisystem disease that can negatively impact health-related quality of life (HRQL) across generic (e.g., physical, social and emotional wellbeing) and disease-specific (e.g., pulmonary, ocular, dermatologic) domains. Measurement of HRQL in sarcoidosis has largely relied on generic patient-reported outcome tools, with little disease-specific measures available. The purpose of this paper is to present the development and testing of disease-specific item banks and short forms of lung, skin and eye problems, which are a part of a new patient-reported outcome (PRO) instrument called the sarcoidosis assessment tool. METHODS: After prioritizing and selecting the most important disease-specific domains, we wrote new items to reflect disease-specific problems by drawing from patient focus group and clinician expert survey data that were used to create our conceptual model of HRQL in sarcoidosis. Item pools underwent cognitive interviews by sarcoidosis patients (n = 13), and minor modifications were made. These items were administered in a multi-site study (n = 300) to obtain item calibrations and create calibrated short forms using item response theory (IRT) approaches. RESULTS: From the available item pools, we created four new item banks and short forms: (1) skin problems, (2) skin stigma, (3) lung problems, and (4) eye Problems. We also created and tested supplemental forms of the most common constitutional symptoms and negative effects of corticosteroids. CONCLUSIONS: Several new sarcoidosis-specific PROs were developed and tested using IRT approaches. These new measures can advance more precise and targeted HRQL assessment in sarcoidosis clinical trials and clinical practice.


Asunto(s)
Oftalmopatías/psicología , Estado de Salud , Enfermedades Pulmonares/psicología , Evaluación del Resultado de la Atención al Paciente , Calidad de Vida , Sarcoidosis/psicología , Enfermedades de la Piel/psicología , Encuestas y Cuestionarios , Adulto , Anciano , Oftalmopatías/diagnóstico , Femenino , Grupos Focales , Encuestas Epidemiológicas , Humanos , Entrevista Psicológica , Enfermedades Pulmonares/diagnóstico , Masculino , Salud Mental , Persona de Mediana Edad , Psicometría/instrumentación , Psicometría/estadística & datos numéricos , Reproducibilidad de los Resultados , Sarcoidosis/diagnóstico , Perfil de Impacto de Enfermedad , Enfermedades de la Piel/diagnóstico
18.
Cancers (Basel) ; 16(10)2024 May 17.
Artículo en Inglés | MEDLINE | ID: mdl-38791988

RESUMEN

The population of young adults (YAs) aged 18-39 living with advanced cancer is growing and faces a compounded set of challenges at the intersection of age and disease. Despite these substantial challenges, behavioral interventions tailored to YAs living with advanced cancer remain scarce. This commentary aims to (1) discuss the unmet psychological, social, and behavioral needs of YAs living with advanced cancer; (2) highlight the paucity of behavioral interventions tailored to this growing population; (3) offer recommendations for the development of behavioral interventions targeting the unique needs of YAs living with advanced cancer; and (4) describe potential far-reaching public health benefits of these targeted behavioral interventions.

19.
BMJ Open ; 14(5): e087626, 2024 May 21.
Artículo en Inglés | MEDLINE | ID: mdl-38772886

RESUMEN

INTRODUCTION: Adolescents and young adults (AYAs) affected by cancer are an understudied group. Effective interventions are needed to support coping with the late effects of cancer, its treatment and to promote quality of life. Nature-based interventions may be promising in support of the self-management and health of AYAs affected by cancer. However, randomised controlled studies (RCTs) on the effectiveness of such interventions are lacking. We performed a first pilot RCT (n=42) that showed that it is feasible and safe to conduct such a study. Here, we propose a full-scale RCT to investigate the effectiveness and safety of a wilderness programme on the mental and physical health of AYAs affected by cancer. METHODS AND ANALYSIS: Participants are 150 AYAs affected by cancer, aged 16-39 years, who will be randomised to a wilderness (n=75) or a hotel stay (n=75). The wilderness programme is an 8-day intervention including a 6-day wilderness expedition. This is followed 3 months later by a 4-day intervention including a 2-day basecamp. Activities include hiking, backpacking, kayaking, rock climbing, mindfulness and bush-crafting. The comparison group is an 8-day hotel stay followed by a 4-day hotel stay (interventions include two travel days) at the same hotel after 3 months. Primary outcomes are psychological well-being and nature connectedness up to 1 year after the study start. Secondary outcomes are quality of life, physical activity and safety parameters. ETHICS AND DISSEMINATION: The Swedish Ethical Review Authority approved the study protocol on 27 September 2023 (reference: 2023-05247-01). The recruitment started on 19 February 2024 and the first part is planned to end on 31 December 2027. Study results will be disseminated by means of scientific publications, presentations at conferences, popular articles, interviews, chronicles and books. News items will be spread via social media, websites and newsletters. TRIAL REGISTRATION NUMBER: ISRCTN93856392.


Asunto(s)
Neoplasias , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Vida Silvestre , Humanos , Adolescente , Adulto Joven , Neoplasias/psicología , Neoplasias/terapia , Adulto , Femenino , Masculino , Salud Mental , Adaptación Psicológica , Estudios Multicéntricos como Asunto
20.
JMIR Cancer ; 2024 Sep 16.
Artículo en Inglés | MEDLINE | ID: mdl-39312766

RESUMEN

BACKGROUND: Young adult (YA) cancer survivors aged 18-39 frequently report unmet health information and peer support needs, as well as poor health-related quality of life (HRQOL). Our team has developed a supportive care intervention, titled TOGETHER-YA, to improve YA cancer survivors' stress management skills. TOGETHER-YA is delivered via videoconference and has shown initial feasibility, acceptability, and promise for improving HRQOL among YA survivors. OBJECTIVE: The purpose of this two-part study was to design and test a website to host the TOGETHER-YA intervention for YA cancer survivors aged 18-39. TOGETHER-YA is a 10-week, group-based program designed to promote health-related quality of life. METHODS: In Part 1, we leveraged an existing online platform and adapted it to meet the needs of TOGETHER-YA. We conducted three iterative waves of usability testing with three YAs per wave to refine the website. In Part 2, we conducted a single-group feasibility trial of TOGETHER-YA using the website. Primary outcomes were feasibility (i.e., recruitment, retention, attendance) and acceptability (i.e., satisfaction). RESULTS: Usability testing participants (N=9) indicated that the TOGETHER-YA website was easy to use (M=5.9, SD=1.3) and easy to learn (M=6.5, SD=0.9) (possible ranges: 1-7). Qualitative feedback identified needed revisions to the aesthetics (e.g., images), content (e.g., session titles), function (e.g., clarity of functionality), and structure (e.g., expandable sections), which were implemented. In the feasibility trial, participants (N=7) were an average of 25 years old (SD=4.7) and mostly non-Hispanic White (57%). Recruitment (70%) and retention (71%) rates and average session attendance (M=7.1, SD=4.2) supported feasibility. Participant agreement with positive statements about TOGETHER-YA and average satisfaction ratings (M=5.06, SD=1.64; possible range: 1-7) demonstrated acceptability. CONCLUSIONS: Results supported the usability, feasibility, and acceptability of the TOGETHER-YA program and website. By hosting the content online, the program effectively addresses YAs' expressed preference for convenience. Future studies are needed to increase TOGETHER-YA's efficiency and explore its efficacy for improving targeted outcomes. CLINICALTRIAL: NCT05597228, October 24, 2022.

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