RESUMEN
OBJECTIVES: We developed a self-reported questionnaire for patients in primary care with chronic conditions aged 50 years or older. The questionnaire supports a more person-centered approach by adopting a biopsychosocial focus on functional status instead of a focus on disease. STUDY DESIGN AND SETTING: Based on the International Classification of Functioning, Disability and Health (ICF), an ICF Primary Care set for patients with chronic conditions was constructed in three phases. In the first phase, we identified relevant ICF categories for the ICF Primary Care set by using existing ICF sets for chronic health conditions. The ICF Primary Care set was completed by a multidisciplinary expert panel and consisted of 52 ICF categories covering ICF's body functions, activities, participation, environmental factors, and personal factors. In the last phase, we constructed a draft version of the questionnaire by converting the ICF categories from the ICF Primary Care set into questions and corresponding scales. To improve the draft version of the questionnaire, we conducted cognitive interviews with patients with chronic conditions in an iterative process, focusing on the problems patients experienced in answering the items of the questionnaire. Interview analysis was used for assessing the content and construct validity of the questionnaire. RESULTS: Thirty cognitive interviews with patients were conducted in five different interview rounds. In these interviews, we identified 124 problems in the responding process of answering the questionnaire, mostly concerning difficulties with the comprehension of the constructs of the questions. The number of problems reduced from an average of 11 problems per interview in the first round to an average of two problems in the last round. CONCLUSION: Conclusion: The final version of the questionnaire demonstrated high content and construct validity (i.e., patients are well capable of describing their functional status in terms of ICF) and is applicable in primary care in the Netherlands.
Asunto(s)
Enfermedad Crónica , Rendimiento Físico Funcional , Atención Primaria de Salud/métodos , Encuestas y Cuestionarios , Actividades Cotidianas , Enfermedad Crónica/epidemiología , Enfermedad Crónica/psicología , Enfermedad Crónica/rehabilitación , Ambiente , Femenino , Humanos , Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud , Masculino , Persona de Mediana Edad , Países Bajos/epidemiología , Atención Dirigida al Paciente/organización & administración , Psicología Social , Reproducibilidad de los Resultados , AutoinformeRESUMEN
STUDY QUESTION: What are the decisive factors in fertility preservation (FP) decision-making in young women scheduled for gonadotoxic therapy? SUMMARY ANSWER: FP decision-making in young women scheduled for gonadotoxic therapy is mainly based on weighing two issues: the intensity of the wish to conceive a child in the future and the expected burden of undergoing FP treatment. WHAT IS KNOWN ALREADY: Future fertility is of importance for young cancer patients whose reproductive function is being threatened by oncological therapy. To prevent or reduce severe psychological effects of infertility as well as feelings of regret about their FP decision after cancer treatment, the quality of fertility preservation counselling (FPC) should be improved. To improve care, those issues forming a decisive factor in FP decision-making for patients should be clarified, as these issues deserve extensive discussion during FPC. Until now, decisive factors have not been isolated from the complex interplay of all aspects of FP that women contemplate during FP decision-making. STUDY DESIGN, SIZE, DURATION: By using a mixed methods methodology, a questionnaire developed after qualitative research involving a selected group of five women who previously received FPC was retrospectively sent to eligible patients (n = 143) who had received FPC (1999 - July 2013) and to whom at least one FP option was offered. PARTICIPANTS/MATERIALS, SETTING, METHODS: Patients had received FPC at a university hospital in the Netherlands, in a setting where financial factors do not play a role in FP. They were aged ≥16 years and were scheduled for gonadotoxic treatment. The relationship between patients' baseline characteristics, their attributed importance to 28 relevant importance items and their FP choices was investigated. MAIN RESULTS AND THE ROLE OF CHANCE: After five interviews, 28 importance items for FP decision-making were identified and included in our questionnaire. Of these 28 importance items, 24 items could be clustered into seven importance themes. A total of 87 patients (61%) responded to our questionnaire. After performing a multivariable logistic regression analysis, proceeding with FP was related to higher attributed importance during FP decision-making to the theme 'Wish to conceive (in the future)' (odds ratio (OR) 10.8, 95% confidence interval (CI) 3.5-34.4) and the item 'Having a stable partner relationship' (OR 2.0, 95% CI 1.0-4.1), while higher attributed importance to the theme 'Expected burden of FP' during FP decision-making (OR 0.08, 95% CI 0.02-0.3) more often resulted in refraining from treatment. LIMITATIONS, REASONS FOR CAUTION: Besides possible recall and selection bias, the fact that this study was performed in Dutch patients aged ≥16 years counselled in a single centre, where finance was not an additional consideration, possibly limits the generalizability of our results to a broader European population of cancer patients. Furthermore, we are not able to draw conclusions about the causality of the associations observed in our study. WIDER IMPLICATIONS OF THE FINDINGS: The wish to conceive and the expected burden of FP treatment should be discussed carefully with patients during FP decision-making, either by the referring healthcare provider or by reproductive medicine specialist. Prospective research is needed to explore the causality of the associations found in this study. Furthermore, in order to deliver high quality patient-centred care, the development of tools to explore patients' wish to conceive (for example in different age categories) and tools to provide clear information about the burden of FP treatments (using the preferred information channels suggested by patients) is needed. STUDY FUNDING/COMPETING INTERESTS: This work was supported by the Radboud Institute for Health Sciences (research school affiliated to the Radboud university medical center). The authors have declared no conflicts of interest with respect to this work.