Assessment of complementary health approaches use in pediatric oncology: Modification and preliminary validation of the "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires.

OBJECTIVE: Complementary Health Approaches (CHA) are commonly used by children with cancer; however, a few health care providers (HCPs) inquire about the use of CHA. A standardized questionnaire could facilitate such clinical discussions. We aimed to adapt and determine the face and content validity of the "Which Health Approaches and Treatments are you using?" (WHAT) child and parent-report questionnaires in pediatric oncology. METHODS: An electronic Delphi survey that included children with cancer (8-18 years), parents, and HCPs and CHA researchers was conducted to reach consensus on the content of the WHAT questionnaires in pediatric oncology. Children and parents from the Hospital for Sick Children (SickKids), and HCPs and researchers from the International Society of Pediatric Oncology and Pediatric Complementary and Alternative Medicine Research and Education Network completed the survey. To determine the face and content validity of the questionnaires, two iterative cycles of individual interviews were conducted with purposive samples of children (8-18 years), parents, and HCPs from SickKids. RESULTS: Consensus was reached on all domains and items of the original WHAT questionnaires after one Delphi cycle (n = 61). For face and content validity testing, the first cycle of interviews (n = 19) revealed that the questionnaires were mostly comprehensive and relevant. However, the paper-based format of the original WHAT was not user-friendly, and generic items were vague and not aimed at facilitating clinical dialogues about CHA use. The WHAT questionnaires were then modified into electronic cancer-specific self- and proxy-report questionnaires including 13 and 15 items, respectively. The second cycle (n = 21) showed no need for further changes. CONCLUSIONS: The modified electronic cancer-specific WHAT questionnaires showed adequate face and content validity. The next step is to determine inter-rater reliability, construct validity, and feasibility of administration of the modified WHAT questionnaires in pediatric oncology.

Inter-Rater Reliability, Construct Validity, and Feasibility of the Modified "Which Health Approaches and Treatments Are You Using?" (WHAT) Questionnaires for Assessing the Use of Complementary Health Approaches in Pediatric Oncology.

BACKGROUND: This study aimed to test the inter-rater reliability, construct validity, and feasibility of the modified "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires in pediatric oncology; Methods: Parent-child dyads were invited to complete self- and proxy-report-modified WHAT, Pediatric Quality of Life Inventory, demographics, a diary of the child's recent use of CHA, and a questionnaire assessing the aspects of feasibility. Parents were asked to complete a satisfaction of their children's use of the CHA survey; Results: Twenty-four dyads completed the study. The mean weighted kappa showed strong inter-rater reliability (k = 0.77, SE = 0.056), and strong agreements between the modified WHAT and the diary (self-report [k = 0.806, SE = 0.046] and proxy-report [k = 0.894, SE = 0.057]). Significant relationships were found only between recent and non-recent CHA users in relation to the easy access to CHA (self-report [p = 0.02], proxy-report [p < 0.001]). The mean scores of the feasibility scale (out of 7.0) for the self- and proxy-report were 5.64 (SD = 0.23) and 5.81 (SD = 0.22), respectively, indicating the feasibility of the modified WHAT; Conclusions: The findings provide initial evidence of the reliability and validity of the modified WHAT and their feasibility. Further research is needed to test the theoretical relationships and further explore the validity and reliability of the modified WHAT.

The effects of an 8-week knitting program on osteoarthritis symptoms in elderly women: A pilot randomized controlled trial.

BACKGROUND: Exercise therapy is effective in reducing symptoms and disability associated with hand osteoarthritis (HOA) but often has low adherence. An intervention consisting in a meaningful occupation, such as knitting, may improve adherence to treatment. This pilot randomized controlled trial (RCT) studied the adherence and clinical effectiveness of a knitting program in older females suffering from HOA to evaluate the acceptability of this intervention and assess the feasibility of a larger-scale RCT. METHODS: Single-blind, two-arm pilot RCT with a parallel group design with 37 participants (18 control, 19 intervention). Control participants were given an educational pamphlet and assigned to a waiting list. The knitting program (8-week duration) had two components: bi-weekly 20-min group knitting sessions and daily 20-min home knitting session on the 5 remaining weekdays. Measures included knitting adherence (implementation outcomes) as well as stiffness, pain, functional status, hand physical activity level, patient's global impression of change, health-related quality of life, self-efficacy, and grip strength (clinical outcomes measured throughout the 8-week program and 4 weeks after the intervention). RESULTS: Our protocol is feasible and the intervention was acceptable and enjoyable for participants, who showed high adherence. No difference was observed between the two groups for any of the clinical outcome measures (all p > .05). CONCLUSION: Knitting is a safe and accessible activity for older women with HOA. However, our 8-week knitting program did not result in improvements in any of our outcome measures. Knitting for a longer period and/or with higher frequency may yield better outcomes.

Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map.

BACKGROUND: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. OBJECTIVE: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. METHODS: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8-18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. RESULTS: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. CONCLUSION: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.

Youths with juvenile idiopathic arthritis (JIA) often feel pain and try many pain treatments such as medications and physical or psychological treatments. Choosing treatments can be hard for families, and health care providers do not always provide information on pain treatments. Our team is developing the JIA Option Map, a tool that presents information on pain treatments based on personal preferences. The tool takes patients through a five-step process where they describe their pain, express their preferences, and learn about more than 30 pain treatments. Patients can then choose treatments and make a plan to use them. This paper explains how a paper-based version of the tool was developed and whether it is suitable for youths, parents, and health care providers. The tool was developed by holding meetings with youths with JIA, health care providers, and researchers to agree on the content and format. We also interviewed youths with JIA, parents, and health care providers to test whether it was suitable. All participants felt that the tool was suitable and that it would be useful for making decisions about pain treatments. Participants liked the idea of using a web-based tool with coaching by health care providers. Work is underway to develop this improved version of the JIA Option Map.

Questionnaires assessing the use of complementary health approaches in pediatrics and their measurement properties: A systematic review.

OBJECTIVES: To identify questionnaires assessing the use of complementary health approaches (CHA) in pediatrics, describe their content, and appraise the methodological quality of the studies and the measurement properties of the questionnaires. METHOD: Major electronic databases were searched from 2011 to 2020. Studies which aimed to assess the use of CHA and studies which reported developing and validating CHA questionnaires in pediatrics were included. Two reviewers independently screened the studies, extracted the data, and rated the methodological quality of the studies and measurement properties of the questionnaires using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. When consensus was not reached, a third reviewer was consulted. RESULTS: Thirty-eight studies were included. From these studies, 35 CHA questionnaires with a variety of different items were identified. Only two studies aimed to evaluate the measurement properties of two questionnaires. One questionnaire, available as a self- and proxy-report, was initially validated in children with juvenile idiopathic arthritis, and the other, available as an interviewer-administered questionnaire, was validated in children with cancer. According to the COSMIN, the methodological quality of both studies was inadequate or doubtful, and both questionnaires was not thoroughly validated. CONCLUSION: This systematic review showed a lack of a thoroughly validated CHA questionnaire in pediatrics. However, two questionnaires were found to hold promise. To address this gap, one of the existing questionnaires should be adapted and further validated.

Use of Complementary Health Approaches for Acute Complaints Presenting to the Emergency Department.

OBJECTIVE: This study aimed to determine the prevalence of complementary health approaches (CHAs) specifically for acute complaints in patients assessed in a pediatric emergency department (ED) and factors associated with use. METHODS: A cross-sectional survey was offered to patients between the age of 28 days and 18 years assessed at a tertiary pediatric ED between December 2014 and July 2015. Univariate and multivariate logistic regressions were used to identify variables associated with CHA use. RESULTS: Of 475 potential participants, 412 (86.7%) participated, of which 369 (89.5%) completed the survey. Overall, 28.7% (95% confidence interval [CI], 24.3-33.5) reported using any CHA for their child to treat the presenting complaint in the prior 72 hours to the ED visit. Gastrointestinal complaints had the highest use of CHA (46.3% of presentations endorsed use). The most common complementary health products used were vitamins and minerals (40.9%; 95% CI, 31.2-51.4); the most common complementary health practice used was massage (37.2%; 95% CI, 24.4-52.1). Multivariate analysis showed lower odds of using CHA for rash/skin complaint (odds ratio, 0.23; 95% CI, 0.09-0.59; P < 0.01) or musculoskeletal/extremity complaints (odds ratio, 0.23; 95% CI, 0.07-0.75; P = 0.01) compared with use for fever. No statistically significant association was found between CHAs use and child's sex, child's age, private insurance, or caregiver education. CONCLUSIONS: Caregivers commonly use CHA for acute pediatric complaints requiring an ED visit, with greatest use for gastrointestinal complaints. Clinicians should consider the use and safety of CHA when evaluating children presenting to the ED with acute conditions.

Use and perceived effectiveness of complementary health approaches in children.

BACKGROUND AND OBJECTIVES: Up to one-half of children may use complementary health approaches (CHA). However, current prevalence in North America, variables associated with CHA use and caregiver perceptions of effectiveness are unclear. We aimed to determine the self-reported use of CHA during the previous 12 months in paediatric patients, demographic variables associated with CHA use and perceptions around effectiveness of CHA. METHODS: A cross-sectional survey study of patients aged between 28 days and 18 years who presented to a large paediatric emergency department was conducted between December 2014 and July 2015. Univariate analysis and multivariate logistic regression were used to examine variables associated with CHA use. RESULTS: Of 475 potential participants, 412 (86.7%) responded to the questionnaire, of whom 369 (89.5%) had completed the entire survey. Of these, 61.7% (95% confidence interval [CI] 56.7% to 66.6%) reported using CHA for their child. The most used CHA products were vitamins and minerals (59.2%, 95% CI 52.4% to 65.7%). Among CHA practices, massage (50.0%, 95% CI 15.5% to 30.1%) was most common. Most CHA users perceived effectiveness of the therapy used. Parental education remained statistically significant (P=0.03) in multivariate logistic regression; the odds of CHA use among caregivers with university-level education were 1.65 times higher when compared with those without (95% CI 1.04% to 2.61%). CONCLUSIONS: CHA use is higher than previously reported in children. Given the high self-reported perceived effectiveness, paediatricians and family physicians should review CHA use with their patients in an open, non-judgmental manner, exploring both perceptions of safety and efficacy.

The Ottawa panel clinical practice guidelines for the management of knee osteoarthritis. Part one: introduction, and mind-body exercise programs.

OBJECTIVE: To identify effective mind-body exercise programs and provide clinicians and patients with updated, high-quality recommendations concerning non-traditional land-based exercises for knee osteoarthritis. METHODS: A systematic search and adapted selection criteria included comparative controlled trials with mind-body exercise programs for patients with knee osteoarthritis. A panel of experts reached consensus on the recommendations using a Delphi survey. A hierarchical alphabetical grading system (A, B, C+, C, D, D+, D-) was used, based on statistical significance ( P < 0.5) and clinical importance (⩾15% improvement). RESULTS: The four high-quality studies identified demonstrated that various mind-body exercise programs are promising for improving the management of knee osteoarthritis. Hatha Yoga demonstrated significant improvement for pain relief (Grade B) and physical function (Grade C+). Tai Chi Qigong demonstrated significant improvement for quality of life (Grade B), pain relief (Grade C+) and physical function (Grade C+). Sun style Tai Chi gave significant improvement for pain relief (Grade B) and physical function (Grade B). CONCLUSION: Mind-body exercises are promising approaches to reduce pain, as well as to improve physical function and quality of life for individuals with knee osteoarthritis.

Development and Preliminary Face and Content Validation of the "Which Health Approaches and Treatments Are You Using?" (WHAT) Questionnaires Assessing Complementary and Alternative Medicine Use in Pediatric Rheumatology.

OBJECTIVE: Complementary and alternative medicine (CAM) is commonly used by children with juvenile idiopathic arthritis (JIA), yet no validated questionnaires assess that use. The objective of this study was to develop child self- and parent proxy-report questionnaires assessing CAM use and to determine the face and content validity of the "Which Health Approaches and Treatments are you using?" (WHAT) questionnaires in pediatric rheumatology. METHODS: A sequential phased mixed methods approach was used to develop the questionnaires. A Delphi Survey of 126 experts followed by an interdisciplinary consensus conference of 14 stakeholders in CAM, general pediatrics and pediatric rheumatology was held to develop consensus on the content of the questionnaires using a nominal group technique. To determine face and content validity of the questionnaires, two groups, including (a) a purposive sample of 22 children with JIA 8 to 18 years and their parents from the Children's Hospital of Eastern Ontario and the Hospital for Sick Children, and (b) 21 Canadian pediatric rheumatology experts, participated in interviews. Participants were independently asked about the goal, understandability and comprehensiveness of the WHAT questionnaires, as well as the relevance of items. RESULTS: Consensus was reached on 17 items of the WHAT questionnaires. The domains found to be relevant were child's CAM use, factors associated with CAM use, perceived impact of CAM use, and communication about CAM. A total of 15 items in the parent proxy-report questionnaire and 13 items in the child report questionnaire showed adequate content validity. CONCLUSIONS: Consensus was reached by experts on the content of a pediatric CAM questionnaire. Face and content validity testing and modifications made to the WHAT questionnaires have helped ensure adequate preliminary validity for use in pediatric rheumatology. This constitutes the basis for further testing of these questionnaires in pediatric rheumatology and for adaptation to other chronic diseases.

A survey of Canadian regulated complementary and alternative medicine schools about research, evidence-based health care and interprofessional training, as well as continuing education.

BACKGROUND: While some effort has been made to integrate complementary and alternative medicine (CAM) information in conventional biomedical training, it is unclear whether regulated Canadian CAM schools' students are exposed to research activities and continuing education, or whether topics such as evidence-based health care and interprofessional collaboration (IPC) are covered during their training. Since these areas are valued by the biomedical training field, this may help to bridge the attitudinal and communication gaps between these different practices. The aim of this study was to describe the training offered in these areas and gather the perceptions of curriculum/program directors in regulated Canadian CAM schools. METHODS: A two-phase study consisting of an electronic survey and subsequent semi-structured telephone interviews was conducted with curriculum/program (C/P) directors in regulated Canadian CAM schools. Questions assessed the extent of the research, evidence-based health care, IPC training and continuing education, as well as the C/P directors' perceptions about the training. Descriptive statistics were used to describe the schools', curriculum's and the C/P directors' characteristics. Content analysis was conducted on the interview material. RESULTS: Twenty-eight C/P directors replied to the electronic survey and 11 participated in the interviews, representing chiropractic, naturopathy, acupuncture and massage therapy schools. Canadian regulated CAM schools offered research and evidence-based health care training as well as opportunities for collaboration with biomedical peers and continuing education to a various extent (58% to 91%). Although directors were generally satisfied with the training offered at their school, they expressed a desire for improvements. They felt future CAM providers should understand research findings and be able to rely on high quality research and to communicate with conventional care providers as well as to engage in continuing education. Limited length of the curriculum was one of the barriers to such improvements. CONCLUSIONS: These findings seem to reinforce the directors' interest and the importance of integrating these topics in order to ensure best CAM practices and improve communication between CAM and conventional providers.

Measurement properties of questionnaires assessing complementary and alternative medicine use in pediatrics: a systematic review.

OBJECTIVE: Complementary and alternative medicine (CAM) is commonly used by children, but estimates of that use vary widely partly due to the range of questionnaires used to assess CAM use. However, no studies have attempted to appraise measurement properties of these questionnaires. The aim of this systematic review was to critically appraise and summarize measurement properties of questionnaires of CAM use in pediatrics. STUDY DESIGN: A search strategy was implemented in major electronic databases in March 2011 and conference websites, scientific journals and experts were consulted. Studies were included if they mentioned a questionnaire assessing the prevalence of CAM use in pediatrics. Members of the team independently rated the methodological quality of the studies (using the COSMIN checklist) and measurement properties of the questionnaires (using the Terwee and Cohen criteria). RESULTS: A total of 96 CAM questionnaires were found in 104 publications. The COSMIN checklist showed that no studies reported adequate methodological quality. The Terwee criteria showed that all included CAM questionnaires had indeterminate measurement properties. According to the Cohen score, none were considered to be a well-established assessment, two approached the level of a well-established assessment, seven were promising assessments and the remainder (n = 87) did not reach the score's minimum standards. CONCLUSION: None of the identified CAM questionnaires have been thoroughly validated. This systematic review highlights the need for proper validation of CAM questionnaires in pediatrics, which may in turn lead to improved research and knowledge translation about CAM in clinical practice.

Is complementary and alternative healthcare use associated with better outcomes in children with juvenile idiopathic arthritis?

OBJECTIVE: The objectives of this study were (1) to examine the association between the use of complementary and alternative healthcare (CAHC) and subsequent health outcomes; and (2) to explore the association between CAHC use and adherence to conventional treatments in children with juvenile idiopathic arthritis (JIA). METHODS: A cohort of children with JIA (n = 182, mean age 10 yrs) who attended outpatient clinics were followed for one year. We evaluated the use of CAHC, health-related quality of life (HRQOL), global health, physical functioning, pain, and disease severity at 3-month intervals. We also evaluated perceived adherence to treatments. General estimating equations were performed to determine the association between use of CAHC and subsequent outcomes while controlling for possible confounders. RESULTS: CAHC was used by 36.4% of participants over the 12-month period. Use of CAHC was associated with subsequent lower global health and physical functioning despite higher adherence to prescribed medications as assessed by the rheumatologist (p < 0.05). Use of CAHC was not associated with subsequent improved HRQOL or decreased pain or disease severity. CONCLUSION: Children with JIA who use CAHC do not have improved outcomes, at least over the relatively short term. Nevertheless, they seem to be more adherent to conventional treatment according to the rheumatologist.