Danish translation and cultural adaptation of the 'What do you think of hospital' patient reported experience measure for children and adolescents in outpatient settings.

PURPOSE: The aim of this study was to translate the patient reported experience measure (PREM) questionnaire"What do you think of the hospital? Help us to get better!" into Danish used in outpatient clinics and to explore its face and content validity. DESIGN AND METHODS: The translation process followed WHO recommendations and included forward translation, expert panel evaluation, back translation, pre-testing and cognitive interviews with 23 children and adolescents. RESULTS: Children and adolescents were positive to using PREM as a way to express their experiences. The layout of the questionnaire was important as use of colours was more appealing and the topics of the questionnaire were better visualised. The concepts in the original questionnaire related to distinguishing between different rooms for examination and conversation are not used in a Danish context. Otherwise, only minor translation adjustments were needed to match the Danish target group. CONCLUSION: Children and adolescents found that the Danish version of the PREM questionnaire tool was easy to read and understand, and the layout emphasised that they are the target group. After pre-testing among 23 children and adolescents, the questionnaire is now ready for pilottest in a larger group. PRACTICE IMPLICATIONS: The present study provides a tool to generate knowledge and evaluate the experiences of children and adolescents in an outpatient clinic. Using the questionnaire, healthcare staff may monitor the quality of the experiences of children and adolescents and collect data for research purposes. Likewise, it will be possible to compare hospitals and organizations nationally.

A new measure of excessive parental worries about children's health: Development of the Health Anxiety by Proxy Scale (HAPYS).

OBJECTIVE: Health anxiety by proxy is a newly introduced term to describe parents' experience of excessive and unpleasant worries about their child's health. This article describes the development of a new measure, the Health Anxiety by Proxy Scale (HAPYS), for systematic assessment of health anxiety by proxy. METHOD: The development of the HAPYS was performed over three phases. (1) Patients clinically assessed to have health anxiety by proxy participated in semi-structured interviews to elaborate their experience of worries regarding their child's health and their related behaviours, and to examine the face validity of items in an existing questionnaire: 'Illness Worry Scale - parent version'. (2) Based on the findings from Phase 1 the project group and a panel of experts selected and formulated questionnaire items and scoring formats. (3) The HAPYS was pilot-tested twice using cognitive interviewing with healthy parents and parents with health anxiety by proxy followed by further adjustments. RESULTS: The final version of HAPYS consists of 26 items characteristic of health anxiety by proxy and of an impact section with five items. CONCLUSION: Based on the pilot testing the HAPYS showed good face and content validity. It holds the potential to be a valid questionnaire to help clinicians across health care settings assess parents suffering from health anxiety by proxy.

Measurement properties of the Health Anxiety by Proxy Scale (HAPYS): A new questionnaire to assess parents' worries about their child's health.

OBJECTIVE: Health anxiety by proxy refers to parents' excessive worries about their child's health. The Health Anxiety by Proxy scale (HAPYS) is a new self-report questionnaire to assess parents' worries and behaviors regarding their child's health. This study aimed to investigate the measurement properties of the HAPYS. METHODS: Questionnaires were completed by 204 parents, and a HAPYS score was obtained for 200 parents: 39 parents diagnosed with health anxiety, 33 parents with different anxiety disorders, 33 parents with a Functional Somatic Disorder, and 95 healthy parents. We evaluated the following measurement properties: structural validity, reliability, convergent validity ((pain catastrophizing, parents' reports of child's emotional and physical symptoms), discriminant validity (parental reports of child's well-being), and known-groups validity (see compared groups above). RESULTS: HAPYS demonstrated a one factor dimensionality, and excellent internal reliability (α = 0.95; CI: 0.93-0.97) and test-retest reliability after two weeks (ICC = 0.91; CI: 0.87-0.94). Convergent validity with the construct of parental catastrophizing about child pain was good (r = 0.72; CI: 0.64-0.78)). Good known-groups validity was demonstrated by the largest total HAPYS score observed in parents with health anxiety (median = 35; IQR: 9-53) and the lowest score in healthy parents (median = 9; IQR: 5-15) (p < 0.001). CONCLUSION: The findings support that HAPYS is a useful measure of health anxiety by proxy. Future research should examine the measurement properties in larger samples and different languages with further statistical analyses of structural validity.

Internet-Delivered Therapy for Parents With Health Anxiety by Proxy: Protocol for a Single-Case Experimental Design Study.

BACKGROUND: Health anxiety (HA) by proxy is described as parents' obsessive worries that their child is severely ill although this is not medically confirmed. Research on HA by proxy suggests that it is highly distressing for the parent and that the child may be at risk of developing maladaptive symptom coping strategies. No targeted treatment for this group exists. We developed PROXY, an 8-week psychological internet-delivered treatment for parents with HA by proxy. The treatment components of PROXY are informed by cognitive behavioral therapy as well as acceptance and commitment therapy, and it was developed in collaboration with parents experiencing HA by proxy and clinical experts. OBJECTIVE: This paper describes the protocol for a study investigating the potential effects of PROXY on parents' worries about their children's health using a single-case experimental design (SCED). METHODS: Five parents clinically evaluated as experiencing HA by proxy will be included. A replicated randomized SCED study will be conducted in which each participant will be randomized to receive treatment after a baseline period of between 7 and 26 days (phase A). The treatment phase duration is 8 weeks for all participants (phase B), followed by a follow-up phase lasting between 14 and 33 days (phase C), ensuring that all participants remain in the study for 96 days. Participants will report daily anxiety level by SMS text message throughout the study. They will also answer self-report questionnaires, including questions on HA by proxy and own HA, 4 times during the study. Data will be submitted to structured visual analysis to inspect anxiety level, the variability of anxiety, trends, the overlap of data points among phases, when effects occur, and the consistency of data patterns across participants. Furthermore, randomization tests will be conducted for each participant to test the null hypothesis that PROXY will have no effect on participants' anxiety. RESULTS: The recruitment of parents began in June 2022. As of March 2, 2023, a total of 4 parents have been included in the study. Data collection was expected to cease in April 2023. CONCLUSIONS: To the best of our knowledge, this protocol describes the only study of treatment for HA by proxy. As the prevalence of this condition is still unknown, a SCED was chosen because this method allows the inclusion of very few participants while still providing information on effects and treatment courses. Conducting the study with a replicated randomized phase design enables methodologically sound testing despite the inclusion of very few participants. The results will inform researchers on individual treatment courses and effects, which may direct future research in terms of the possible mechanisms of change, ideas for how to refine the treatment content, and how the treatment may be offered to patients in the future. TRIAL REGISTRATION: ClinicalTrials.gov NCT04830605; https://clinicaltrials.gov/study/NCT04830605. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46927.

Health anxiety by proxy - through the eyes of the parents.

Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to develop the Health Anxiety by Proxy Scale. The present study is a secondary analysis of these semi-structured interview data using interpretative phenomenological analysis aiming to explore for the first time the lived experience of parents with health anxiety by proxy. Analysis revealed three main themes: 'Faces of distress' describing various aspects of parents' experienced distress; 'Invasive insecurity and mistrust' portraying how anxiety affects parents' relationship with their children, health professionals and family; and 'Making sense of own worries' covering parents' ambivalence regarding their anxiety and rationalization of their worries. Knowledge about perspectives of parents who suffer from health anxiety by proxy can inform communication in clinical encounters where validation of parents' experiences may be key to forging an alliance for further treatment; and to recognising and potentially lowering barriers to receiving help that lies in parents' potential mistrust in professional help.