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1.
Br J Health Psychol ; 28(4): 1113-1131, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-37414737

RESUMEN

OBJECTIVES: Rigorous photoprotection is the only means to prevent skin cancer in people with the rare condition of xeroderma pigmentosum (XP). We conducted a qualitative process evaluation of patient experiences and responses to a highly personalized, multi-component intervention, 'XPAND', designed to influence the psychosocial determinants of inadequate photoprotection among adults with XP. DESIGN: Qualitative study of 15 patients following participation in a RCT. METHODS: Semi-structured interviews explored acceptability, changes in photoprotection and attributions for behavioural changes. Analysis followed a framework approach. RESULTS: Participants were overwhelmingly positive in their views of the quality and range of components of XPAND and the relevance to their personal photoprotection barriers. All participants reported improved adherence to at least one photoprotection activity and nearly two-thirds of participants noted improvements across multiple activities. Participants believed improvements in their photoprotection behaviours were influenced by different change mechanisms. Sunscreen application, was mainly facilitated by habit formation, prompted by text messages, whereas the wearing of a photoprotective face buff was influenced by strategies, learnt during one-to-one sessions, to overcome worry about looking different. Enhancement of general self-confidence and perceived support from XPAND described by participants facilitated change more broadly. CONCLUSIONS: Exploration of responses to XPAND is required in the international XP population, followed by adaptation and evaluation to see if it could benefit other patient groups at higher risk of skin cancer. Implications for approaches to behaviour change include the acceptability of complex multidimensional interventions, the importance of dynamic personalization and the interactive nature of behaviour change mechanisms.

2.
J Med Genet ; 59(11): 1095-1103, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35393336

RESUMEN

BACKGROUND: For patients with xeroderma pigmentosum (XP), the main means of preventing skin and eye cancers is extreme protection against ultraviolet radiation (UVR), particularly for the face. We have recently developed a methodology for objectively measuring photoprotection behaviour ('UVR dose to facial skin') and have found that the degree of photoprotection varies greatly between patients with XP. We have previously identified factors affecting photoprotection behaviour in XP using a subjective measure of photoprotection. Here, we have used this objective methodology to identify the factors which determine photoprotection behaviour in XP. METHODS: We studied 29 psychological, social, demographic and clinical variables in 36 patients with XP. We have previously objectively measured UVR protection (by measuring the dose of UVR reaching the skin of the face over a 3-week period) in these patients. Here, we use linear mixed-effects model analysis to identify the factors which lead to the differences in degree of photoprotection observed in these patients. RESULTS: Psychosocial factors accounted for as much of the interindividual variation in photoprotection behaviour (29%) as demographic and clinical factors (24%). Psychosocial factors significantly associated with worse UVR protection included: automaticity of the behaviours, and a group of beliefs and perceptions about XP and photoprotection known to associate with poor treatment adherence in other diseases. CONCLUSIONS: We have identified factors contributing to poor photoprotection in XP. Identifying these potentially reversible psychosocial features has enabled us to design an intervention to improve photoprotection in patients with XP, aiming to prevent skin and eye cancers in these patients.


Asunto(s)
Neoplasias del Ojo , Neoplasias Cutáneas , Xerodermia Pigmentosa , Humanos , Xerodermia Pigmentosa/complicaciones , Xerodermia Pigmentosa/epidemiología , Xerodermia Pigmentosa/genética , Rayos Ultravioleta/efectos adversos , Neoplasias Cutáneas/genética , Cara , Reparación del ADN
4.
Health Psychol Behav Med ; 8(1): 475-500, 2020 Oct 27.
Artículo en Inglés | MEDLINE | ID: mdl-34040882

RESUMEN

Background: Intervention Mapping (IM) is a systematic approach for developing theory-based interventions across a variety of contexts and settings. This paper describes the development of a complex intervention designed to reduce the dose of ultraviolet radiation (UVR) reaching the face of adults with Xeroderma Pigmentosum (XP), by improving photoprotection. XP is a genetic condition that without extreme UVR photoprotection, leads to high risk of developing skin cancer. Methods: The IM protocol of 6 steps was applied, involving comprehensive mixed-methods formative research. Key stakeholders (XP clinical staff and Patient and Public Involvement Panel), were instrumental at every step. Behaviour change methods were informed by the IM taxonomy, therapeutic approaches (e.g. ACT, CBT) and coded according to the taxonomy of behaviour change techniques (version 1). Results: We designed a personalised modular intervention to target psychosocial determinants of photoprotective activities that influence the amount of UVR reaching the face. Content was developed to target determinants of motivation to protect and factors preventing the enactment of behaviours. Participants received personalised content addressing determinants/barriers most relevant to them, as well as core 'behaviour-change' material, considered important for all (e.g. SMART goals). Core and personalised content was delivered via 7 one-to-one sessions with a trained facilitator using a manual and purpose designed materials: Magazine; text messages; sunscreen application video; goal-setting tools (e.g. UVR dial and face protection guide); activity sheets. Novel features included use of ACT-based values to enhance intrinsic motivation, targeting of emotional barriers to photoprotection, addressing appearance concerns and facilitating habit formation. Conclusion: IM was an effective approach for complex intervention design. The structure (e.g. use of matrices) tethered the intervention tightly to theory and evidence-based approaches. The significant amount of time required needs to be considered and may hinder translation of IM into clinical and non-academic settings.

5.
Health Psychol Behav Med ; 8(1): 543-572, 2020 Nov 07.
Artículo en Inglés | MEDLINE | ID: mdl-34040885

RESUMEN

BACKGROUND: Individualised behaviour change interventions can result in greater effects than one-size-fits-all approaches. Factors linked to success include dynamic (vs. static) tailoring, and tailoring on behaviour, multiple theoretical variables, and participant characteristics. XP is a very rare (∼100 UK patients) genetic disease, involving an inability to repair ultraviolet radiation (UVR)-induced damage, resulting in skin cancers and eye damage from an early age, and mean life expectancy of 32-years. Management involves rigorous UVR photoprotection, which is often inadequate, and no interventions have been published. UK-based care is personalised and delivered by a multidisciplinary team at the National XP Service in London. Following an intensive, mixed-methods formative phase with patients diagnosed with XP (n-of-1, qualitative interviews, objective UVR measurement, cross-sectional survey) and relevant stakeholder consultation (clinical and patient/public teams), the 'XPAND' intervention was developed. This paper describes the comprehensive and novel tailoring and personalisation processes used to deliver the intervention. METHODS: XPAND consists of core and personalised modules targeting cue-based (time of day, weather, symptoms), belief-based (motivation, priority), self-regulatory (effort, barriers, planning), and emotional (stress, self-consciousness, mental exhaustion) factors, social support, disclosure, habit, and willingness, using appropriately-matched BCTs. A-priori, phase I data and a baseline profiling questionnaire (data sources) were used to allocate modules to participants ('personalisation') and to adapt module content ('tailoring'). Iterative decisions about delivery were based on patient response to feedback, identification of additional barriers (e.g. reasons for varying protection across contexts), and emergence of new barriers as improvements in protection were attempted or achieved (e.g. appearance concerns). CONCLUSIONS: Dynamic multi-level personalisation and tailoring based on mixed-methods in XPAND allowed for insights and decision-making not possible with cross-sectional quantitative or qualitative methods alone. Data collection and allocation/adaptation methods may be of use in other rare conditions where small patient numbers mean that within-participant, individual-level delivery is well-suited and feasible.

6.
Photodermatol Photoimmunol Photomed ; 36(2): 118-125, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31596975

RESUMEN

BACKGROUND/PURPOSE: Adherence to photoprotection is the only way to prevent skin cancers and eye disease in xeroderma pigmentosum (XP). No validated self-report questionnaire exists for assessing adherence to photoprotection practices in individuals with XP. We sought to validate a self-reported measure of adherence to face photoprotection in this population. METHODS: Sixty six XP patients recruited from the patient list of the XP specialist service in London, UK, completed a questionnaire of adherence to specific photoprotection behaviours. We measured objective ultraviolet radiation (UVR) exposure to the face continuously for 21 days with a wristworn UVR electronic dosimeter combined with a daily photoprotection diary. Reliability and convergent validity of the questionnaire were tested in relation to overall UVR exposure, UVR dose to the face, daily photoprotection activities, other self-reported photoprotection practices and clinical ratings of patient's protection. RESULTS: Internal consistency of the questionnaire was satisfactory. Questionnaire total scores were concordant with objective UVR exposure and UVR dose to the face. However, not all participants who reported good/excellent face photoprotection on the questionnaire recorded high levels of photoprotection in the daily diary. Correlations between the questionnaire and other practices and the clinical rating ranged from small to large in size. There was no correlation between the level of face photoprotection and self-reported avoidance of going outside. CONCLUSIONS: Our questionnaire was reliable and had good convergent validity with other indicators of photoprotection. This questionnaire could assist clinicians to detect low levels of adherence, and the methodology used to develop validated questionnaires for other photosensitive conditions.


Asunto(s)
Cara , Autoinforme , Encuestas y Cuestionarios , Xerodermia Pigmentosa/fisiopatología , Adolescente , Adulto , Femenino , Conductas Relacionadas con la Salud , Humanos , Masculino
7.
Br J Health Psychol ; 25(1): 89-106, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31756279

RESUMEN

OBJECTIVES: Social support influences adherence to treatment in chronic illness, but there is uncertainty about its facilitators and constraints. This study explored the forms, processes, and responses associated with mobilization of informal support across three life contexts amongst patients with Xeroderma Pigmentosum (XP), a condition requiring rigorous photoprotection to reduce cancer risks. DESIGN: Qualitative interview study. METHODS: A total of 25 adults with XP participated in semi-structured interviews conducted face to face. An inductive thematic analysis was applied using a framework approach. RESULTS: Practical support, involving both assistance with recommended photoprotection and adjusting daily activities to reduce exposure, was the key form of support provided by family and friends. However, responses to this support differed with two groups identified based on the relative priority given to photoprotection in daily life and processes of disclosure. For 'positive responders', support aligned with their own priorities to photoprotect, conveyed feelings of being cared-for and was facilitated by talking openly. In contrast, for 'negative responders' support conflicted with their priority of living 'normally' and their limited disclosure hindered receipt of helpful support in personal, clinic, and work interactions. Fears of workplace stigma also reduced disclosure amongst participants open in other contexts. CONCLUSIONS: Practical support conveyed psychosocial support with positive effects on adherence. This suggests the traditional separation into practical and emotional support is overly simplistic, with measures potentially missing important aspects. Interactional processes contribute to the effects of support, which can be addressed by targeting disclosure, stigma, and other barriers at individual and organizational levels. Statement of contribution What is already known on this subject? Social support can be both a facilitator and a hindrance to treatment adherence. Practical support is identified as the most important form of support in the context of adherence. The processes of support underpinning its relationship to adherence are unclear. What does this study add? Variations in the provision and impacts of support are influenced by participants' disclosure and attitudes to photoprotection, with two key groups comprising 'positive responders' and 'negative responders'. The influence of emotional support on adherence may be underestimated through neglect of the ways in which practical support often conveys feelings of being valued and cared-for. Barriers to mobilizing effective adherence support extends across life spheres, with fears of stigma and discrimination in work settings highlighting the need to intervene at individual and organizational levels.


Asunto(s)
Cooperación del Paciente/estadística & datos numéricos , Ropa de Protección/estadística & datos numéricos , Apoyo Social , Protectores Solares/uso terapéutico , Xerodermia Pigmentosa/psicología , Xerodermia Pigmentosa/terapia , Adolescente , Adulto , Familia/psicología , Femenino , Amigos/psicología , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Cooperación del Paciente/psicología , Investigación Cualitativa , Adulto Joven
8.
Qual Health Res ; 30(8): 1275-1286, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-30741094

RESUMEN

In this study, we examine photoprotection for children with Xeroderma pigmentosum (XP), a rare genetic skin disease requiring rigorous photoprotection, to reduce risks of severe burning and skin cancers from exposure to ultraviolet radiation (UVR). We elicit the views and experiences of both children and their parents to inform the care and support provided. Qualitative semistructured interviews were undertaken with 12 child-parent dyads recruited from the National XP Specialist service in London. We employed a framework approach to analysis. This identified a high level of photoprotection based either on "protection" to facilitate normal activities or "avoidance" of outdoor activity with priority given to normality in the future. These approaches were shaped by perceptions of clinical risk, the emphasis given to a normal family life and families' circumstances and resources. The findings contribute to notions of normalization and coping with demanding care regimens and inform approaches to working with families.


Asunto(s)
Xerodermia Pigmentosa , Humanos , Londres , Padres , Rayos Ultravioleta , Reino Unido
9.
BMJ Open ; 9(7): e028577, 2019 07 17.
Artículo en Inglés | MEDLINE | ID: mdl-31320353

RESUMEN

INTRODUCTION: Poor adherence to photoprotection for people with xeroderma pigmentosum (XP) can be life-threatening. A randomised controlled trial (RCT) is being conducted to test the efficacy of a personalised adherence intervention (XPAND) to reduce the level of ultraviolet radiation (UVR) reaching the face, by improving photoprotection activities in adults with XP. METHODS AND ANALYSIS: A two-armed parallel groups RCT, where we randomised 24 patients with suboptimal adherence to either an intervention group who received XPAND in 2018 or a delayed intervention group who will receive XPAND in 2019. XPAND involves seven sessions, one-to-one with a facilitator, using behaviour change techniques and specially designed materials to target barriers to photoprotection. Following baseline assessment in April 2018 (t0) and intervention, the primary outcome will be measured across 21 consecutive days in June and July 2018 (t1). The primary outcome is the average daily UVR dose to the face (D-to-F), calculated by combining objective UVR exposure at the wrist (measured by a dosimeter) with face photoprotection activities recorded on a daily UVR protection diary. Secondary outcomes include average daily UVR D-to-F across 21 days in August (t2); psychosocial process variables measured by daily questions (t0, t1, t2) and self-report questionnaires (t0, t1, t2, December 2018 (t3)). Intervention cost-utility is assessed by service use and personal cost questionnaires (t0, t3). The delayed intervention control arm participants will complete three further assessments in April 2019 (t4) and June-July 2019 (t5), and December 2019 (t6) with dosimetry and UVR protection diary completed for 21 days at t4 and t5. A process evaluation will be conducted using mixed methods. ETHICS AND DISSEMINATION: Ethical approval has been received from West London & GTAC REC 17/LO/2110. Results will be disseminated in peer-reviewed journals and at conferences. This study tests a novel intervention, which, if successful, will be integrated into routine care. TRIAL REGISTRATION NUMBER: NCT03445052; Pre-results.


Asunto(s)
Conductas Relacionadas con la Salud , Cooperación del Paciente , Rayos Ultravioleta/efectos adversos , Xerodermia Pigmentosa/terapia , Adulto , Consejo/métodos , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto , Protectores Solares/uso terapéutico , Encuestas y Cuestionarios , Xerodermia Pigmentosa/psicología
10.
Br J Health Psychol ; 24(3): 668-686, 2019 09.
Artículo en Inglés | MEDLINE | ID: mdl-31183946

RESUMEN

OBJECTIVES: Xeroderma pigmentosum (XP) is an extremely rare genetic disorder (approximately 100 known cases in the United Kingdom), where DNA damage caused by ultraviolet radiation in daylight cannot be repaired. Adherence to photoprotection is essential to prevent skin cancer. We investigated psychological correlates of photoprotection in the XP population of Western Europe and the United States. DESIGN: Cross-sectional survey of adults with XP and caregivers of patients <16 years and those with cognitive impairment in the United Kingdom, Germany, the United States, and France (n = 156). METHODS: Photoprotection activities to protect the face and body when outdoors; avoidance of going outside during daylight hours; intention; self-efficacy; and social support were assessed using measures developed for this study. Participants answered questions about their illness representations of XP (BIPQ); beliefs about photoprotection (BMQ); automaticity (i.e., without conscious effort) (SRBAI); clinical and demographic characteristics. Ordinal logistic regressions determined factors associated with photoprotection. RESULTS: One third did not achieve optimal face photoprotection. After controlling for demographic and clinical factors, modifiable correlates of higher photoprotection included greater perceived control of XP, stronger beliefs in necessity and effectiveness of photoprotection, and higher intention. Avoidance of going outside was associated with greater photoprotection concerns, more serious illness consequences, and higher XP-related distress. Greater automaticity and higher self-efficacy were associated with better protection across all outcomes. CONCLUSIONS: Approximately half of all known cases across three European countries participated. Identified modifiable predictors of photoprotection may be targeted by interventions to reduce the incidence of skin cancers in the immediate future, when a treatment breakthrough is unlikely. Statement of contribution What is already known on this subject? Adherence to photoprotection in other populations at elevated risk from skin cancer is poor; however, the level in XP is unknown. Research across chronic conditions shows that adherence to treatment and lifestyle recommendations are influenced by illness perceptions, self-efficacy, and treatment beliefs. Studies on photoprotection conducted with the general population have found that perceived risk, perceptions of ultraviolet radiation (UVR) protection, self-efficacy for the behaviour, and automaticity (behaviours that are enacted with little conscious awareness) are related to better photoprotection. What does this study add? This is the first international survey to examine adherence and its correlates in people with XP (an under-researched group at very high risk of fatal skin cancer). Adherence varies and at least one third have potential for improvement. Perceptions about XP, photoprotection beliefs, self-efficacy, intention, and automaticity were associated with photoprotection of the face and body when outdoors. Negative emotional representations of XP were associated with avoidance of going outside during daylight hours.


Asunto(s)
Protección Radiológica , Autoeficacia , Neoplasias Cutáneas , Rayos Ultravioleta , Xerodermia Pigmentosa , Adulto , Estudios Transversales , Europa (Continente) , Femenino , Alemania , Conductas Relacionadas con la Salud , Humanos , Incidencia , Masculino , Enfermedades Raras , Neoplasias Cutáneas/prevención & control , Encuestas y Cuestionarios , Rayos Ultravioleta/efectos adversos , Reino Unido , Xerodermia Pigmentosa/terapia
11.
BMJ Open ; 9(2): e024445, 2019 02 19.
Artículo en Inglés | MEDLINE | ID: mdl-30782905

RESUMEN

BACKGROUND: A high level of photoprotection is required by people with xeroderma pigmentosum (XP), a rare skin disease, to reduce skin cancer and other risks. However poor photoprotection is thought to be widespread. PURPOSE: This study examines the influences on photoprotection behaviours in adults with XP. DESIGN: Inductive qualitative study with semistructured interviews. Analysis employed a framework approach. SETTING: National sample recruited through a specialist XP centre in London. METHODS: Semistructured interviews at patients' homes. All transcripts were coded and themes charted for each participant. Comparisons within and across cases identified common themes and differing motivations and approaches to photoprotection. Credibility of interpretations assessed through patient/carer input and clinic adherence scores. PARTICIPANTS: 25 adults (17 male, eight female) aged 16-63 years with diagnosed XP attending a specialist centre. 18 lived outside London. RESULTS: Awareness of risks of ultraviolet radiation (UVR) and photoprotection was high. However, photoprotection behaviours varied according to perceived necessity and concerns. Three behavioural responses were identified: (1) 'dominated' by planning and routines to achieve a high level of photoprotection with significant activity restrictions and psychosocial impacts. (2) 'resistant' to photoprotection with priority given to avoiding an illness identity and enjoying a normal life. (3) Photoprotection' integrated' with an individual's life with little psychosocial impact. These responses were influenced by illness, personal and contextual factors including age, life stage and social support. Only the 'integrated' group achieved an equilibrium between perceived 'necessity' and 'concerns'. CONCLUSIONS: The personal balance between perceived risks of UVR and social/psychological 'concerns' led to differing behavioural responses and contributes to an understanding of adaptation and normalisation in chronic illness. The study will also inform a series of individualised behavioural interventions to reduce measured UVR exposure among people with XP that are potentially applicable to other conditions with high risks of skin cancer.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Ropa de Protección , Neoplasias Cutáneas/prevención & control , Quemadura Solar/prevención & control , Protectores Solares/uso terapéutico , Xerodermia Pigmentosa/terapia , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Percepción , Investigación Cualitativa , Riesgo , Neoplasias Cutáneas/etiología , Quemadura Solar/etiología , Reino Unido , Xerodermia Pigmentosa/complicaciones , Adulto Joven
12.
J Health Psychol ; 24(14): 2031-2041, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-28810476

RESUMEN

This study explored experiences of stigma in 25 adults with xeroderma pigmentosum. Analysis of semi-structured interviews revealed the changing nature of stigma over the lifetime. Bullying occurred in childhood, whereas adults were questioned about both their photoprotection and skin damage, often resulting in internalised feelings of stigma. Resilience and rejection of feelings of stigma increased with age and experiences of stigma differed across cultures. Findings indicate a need to develop social skills training to help people reject feelings of stigma. Future research should explore perspectives of families, friends and formal institutions and their potential to cause or reduce feelings of stigma.


Asunto(s)
Estigma Social , Xerodermia Pigmentosa/psicología , Adolescente , Adulto , Factores de Edad , Anciano , Anciano de 80 o más Años , Ajuste Emocional , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Reino Unido , Adulto Joven
13.
Health Psychol ; 37(12): 1145-1158, 2018 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-30221970

RESUMEN

OBJECTIVE: Xeroderma pigmentosum (XP) is a very rare inherited disease; the most important aspect of clinical management is rigorous photoprotection from ultraviolet radiation. The aims of this novel study were to (a) understand and categorize the behavioral complexity and within-participant variability in photoprotection of the face in XP; (b) determine the predictors of photoprotection; and (c) identify individual needs for personalized interventions. METHOD: A total of 20 adults with XP completed an ecological momentary assessment (EMA) study over 50 days. Measures included an ultraviolet radiation diary of photoprotective behaviors used at each outdoor occasion (e.g., hat, face visor, sunscreen), and a mobile phone survey assessing self-reported protection (0-100), satisfaction with protection achieved, and predictive variables (e.g., motivation, effort, mood). Descriptive statistics for photoprotective behavior were computed, per person. When possible, individual dynamic logistic regression models were used to investigate the predictors of photoprotection, and correspondence between self-reported protection and behavior. RESULTS: Photoprotection (clothing and sunscreen) was suboptimal for most participants, and discrepancies between self-reported protection and behavior were identified. Modeling of photoprotection was conducted for six participants who went outside sufficient times and used varied protection. Different predictors were identified across participants. Weekend versus weekday, physical symptoms, stress, and feeling self-conscious were most frequently associated with protection. CONCLUSION: The findings support the need for intervention and have implications for the selection of individually tailored behavioral outcomes and intervention targets to improve photoprotection. The method of profiling multiple preventive behaviors using EMA may be of use in other rare conditions involving complex behaviors. (PsycINFO Database Record (c) 2018 APA, all rights reserved).


Asunto(s)
Rayos Ultravioleta/efectos adversos , Xerodermia Pigmentosa/terapia , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
15.
BMJ Open ; 7(8): e018364, 2017 Aug 21.
Artículo en Inglés | MEDLINE | ID: mdl-28827277

RESUMEN

INTRODUCTION: Xeroderma pigmentosum (XP) is a rare genetic condition caused by defective nucleotide excision repair and characterised by skin cancer, ocular and neurological involvement. Stringent ultraviolet protection is the only way to prevent skin cancer. Despite the risks, some patients' photoprotection is poor, with a potentially devastating impact on their prognosis. The aim of this research is to identify disease-specific and psychosocial predictors of photoprotection behaviour and ultraviolet radiation (UVR) dose to the face. METHODS AND ANALYSIS: Mixed methods research based on 45 UK patients will involve qualitative interviews to identify individuals' experience of XP and the influences on their photoprotection behaviours and a cross-sectional quantitative survey to assess biopsychosocial correlates of these behaviours at baseline. This will be followed by objective measurement of UVR exposure for 21 days by wrist-worn dosimeter and daily recording of photoprotection behaviours and psychological variables for up to 50 days in the summer months. This novel methodology will enable UVR dose reaching the face to be calculated and analysed as a clinically relevant endpoint. A range of qualitative and quantitative analytical approaches will be used, reflecting the mixed methods (eg, cross-sectional qualitative interviews, n-of-1 studies). Framework analysis will be used to analyse the qualitative interviews; mixed-effects longitudinal models will be used to examine the association of clinical and psychosocial factors with the average daily UVR dose; dynamic logistic regression models will be used to investigate participant-specific psychosocial factors associated with photoprotection behaviours. ETHICS AND DISSEMINATION: This research has been approved by Camden and King's Cross Research Ethics Committee 15/LO/1395. The findings will be published in peer-reviewed journals and presented at national and international scientific conferences.


Asunto(s)
Cara/efectos de la radiación , Conductas Relacionadas con la Salud , Dosis de Radiación , Rayos Ultravioleta/efectos adversos , Xerodermia Pigmentosa/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Niño , Preescolar , Estudios Transversales , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Lactante , Masculino , Persona de Mediana Edad , Protección Radiológica , Proyectos de Investigación , Autoinforme , Neoplasias Cutáneas/prevención & control , Protectores Solares/uso terapéutico , Reino Unido , Adulto Joven
16.
Psychosom Med ; 79(5): 585-592, 2017 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-27941577

RESUMEN

OBJECTIVE: The aim of the study was to investigate the impact of stress, illness perceptions, and behaviors on healing of venous leg ulcers. METHODS: A prospective observational study of 63 individuals for 24 weeks investigated possible psychosocial predictors of healing. There were two indices of healing: rate of change in ulcer area and number of weeks to heal. Psychological variables were assessed at baseline using self-report measures (Perceived Stress Scale, Hospital Anxiety and Depression Scale, Revised Illness Perception Questionnaire, adapted Summary of Diabetes Self-Care Activities, Adherence Questionnaire, and Short-Form Health Survey). RESULTS: Controlling for sociodemographic and clinical variables, for the 24 weeks, a slower rate of change in ulcer area was predicted by greater stress (standardized ß = -0.61, p = .008), depression (standardized ß = -0.51, p = .039), and holding negative perceptions or beliefs about the ulcer (standardized ß = -1.4, p = .045). By 24 weeks, 69% of ulcers had closed. A more negative emotional response to the ulcer at baseline (i.e., emotional representation of the ulcer) was associated with a greater number of weeks to heal (hazard ratio [HR] = 0.63, 95% confidence interval [CI] = 0.41-0.95, p = .028). Higher educational attainment (HR = 3.22, 95% CI = 1.37-7.55, p = .007) and better adherence to compression bandaging (HR = 1.41, 95% CI = 1.06-1.88, p = .019) were associated with fewer weeks to heal. No other psychosocial variable (stress, perceptions about the ulcer, health behaviors) predicted weeks to heal. CONCLUSIONS: Alongside ulcer-related predictors, psychological and sociodemographic factors were associated with healing. Future research should explore mediating mechanisms underlying these associations and develop interventions to target these variables.


Asunto(s)
Depresión/psicología , Conocimientos, Actitudes y Práctica en Salud , Evaluación de Resultado en la Atención de Salud , Estrés Psicológico/psicología , Úlcera Varicosa/psicología , Úlcera Varicosa/terapia , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos
17.
Health Qual Life Outcomes ; 9: 114, 2011 Dec 16.
Artículo en Inglés | MEDLINE | ID: mdl-22177525

RESUMEN

BACKGROUND: The Individualised Neuromuscular Quality of Life (INQoL) questionnaire is a published muscle disease specific measure of QoL that has been validated using both qualitative and quantitative methods in a United Kingdom population of adults with muscle disease. If INQoL is to be used in other countries it needs to be linguistically and culturally validated for those countries. It may be important to understand any cultural differences in how patients rate their QoL when applying QoL measures in multi-national clinical trials. METHODS: We conducted a postal survey of QoL issues in US adults with muscle disease using an agreed translation, from UK to US English, of the same questionnaire as was used in the original construction of INQoL. This questionnaire included an opportunity for free text comments on any aspects of QoL that might not have been covered by the questionnaire. We examined the responses using both quantitative and qualitative approaches. The frequency of the responses in US versus UK populations was compared using appropriate correlation tests and Rasch analysis. A phenomenological approach was used to guide the qualitative analysis and facilitate the exploration of patients' perceptions and experiences. RESULTS: The US survey received 333 responses which were compared with 251 UK survey responses.We found that INQoL domains covered all the issues raised by US subjects with no additional domains required. The experiences of those with muscle disease were remarkably similar in the US and UK but there were differences related to the impact of muscle disease on relationships and on employment which was greater for those living in the United States. The greater impact on employment was associated with a higher importance rating given to employment in the US. This may reflect the lower level of financial support for those who are unemployed, and the loss of employment related health benefits. CONCLUSIONS: INQoL is appropriate for use in US population but there may be differences in the importance that US subject attach to certain aspects of QoL that could be the basis for further study.If these differences are confirmed then this may have implications for the interpretation of QoL outcomes in multi-national trials.


Asunto(s)
Indicadores de Salud , Enfermedades Neuromusculares , Psicometría/instrumentación , Calidad de Vida , Actividades Cotidianas , Adulto , Empleo/psicología , Empleo/estadística & datos numéricos , Estudios de Evaluación como Asunto , Femenino , Humanos , Masculino , Enfermedades Neuromusculares/fisiopatología , Enfermedades Neuromusculares/psicología , Investigación Cualitativa , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Reino Unido , Estados Unidos
18.
J Psychosom Res ; 67(3): 253-71, 2009 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-19686881

RESUMEN

OBJECTIVE: The current review aims to synthesize existing knowledge about the relationship between psychological stress and wound healing. METHODS: A systematic search strategy was conducted using electronic databases to search for published articles up to the end of October 2007. The reference lists of retrieved articles were inspected for further studies and citation searches were conducted. In addition, a meta-analysis of a subset of studies was conducted to provide a quantitative estimation of the influence of stress on wound healing. RESULTS: Twenty-two papers met the inclusion criteria of the systematic review and a subsample of 11 was included in a meta-analysis. The studies assessed the impact of stress on the healing of a variety of wound types in different contexts, including acute and chronic clinical wounds, experimentally created punch biopsy and blister wounds, and minor damage to the skin caused by tape stripping. Seventeen studies in the systematic review reported that stress was associated with impaired healing or dysregulation of a biomarker related to wound healing. The relationship between stress and wound healing estimated by the meta-analysis was r=-0.42 (95% CI=-0.51 to -0.32) (P<.01). CONCLUSION: Attention now needs to be directed towards investigating potential moderators of the relationship, mediating mechanisms underpinning the association, as well as the demonstration of a causal link by the development of experimental interventions in healthy populations.


Asunto(s)
Nivel de Alerta/fisiología , Estrés Psicológico/complicaciones , Estrés Psicológico/fisiopatología , Cicatrización de Heridas/fisiología , Humanos , Psiconeuroinmunología , Pérdida Insensible de Agua/fisiología
19.
Br J Health Psychol ; 13(Pt 1): 95-102, 2008 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-18230239

RESUMEN

OBJECTIVES: Psychological stress is believed to impair wound healing via a down-regulation of the immune system. Since previous research suggests that disclosure of tra-umatic experiences can result in an up-regulation of immune function, the present study aimed to investigate the impact of a disclosure intervention on the progress of wound healing. DESIGN: The study used a prospective, longitudinal design with random assignment to the control (writing about time management) and experimental group (writing about a traumatic event). METHODS: Participants (N=36) completed questionnaires measuring perceived and emotional distress, loneliness, self-esteem, social support, dispositional optimism, and health-related behaviours. Accurate indication of the healing of a small punch biopsy wound was determined by using a high-resolution ultrasound scanner. RESULTS: Repeated measures ANOVA indicated that the disclosure intervention impacted wound healing. Participants who wrote about traumatic events had significantly smaller wounds 14 and 21 days after the biopsy compared with those who wrote about time management. CONCLUSIONS: It is concluded that a relatively brief and easy to administer intervention can have beneficial effects on wound healing. The potential for use in patient samples is indicated.


Asunto(s)
Afecto , Conductas Relacionadas con la Salud , Autorrevelación , Cicatrización de Heridas , Adolescente , Adulto , Estudios de Seguimiento , Humanos , Soledad , Masculino , Estudios Prospectivos , Autoimagen , Apoyo Social , Estrés Psicológico/psicología , Encuestas y Cuestionarios
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