An umbrella review of the literature on the effectiveness of goal setting interventions in improving health outcomes in chronic conditions.

PURPOSE: To identify the contexts in which goal setting has been used in chronic disease management interventions and to estimate the magnitude of its effect on improvement of health outcomes. METHODS: The strength of evidence and extent of potential bias in the published systematic reviews of goal setting interventions in chronic conditions were summarized using AMSTAR2 quality appraisal tool, number of participants, 95% prediction intervals, and between-study heterogeneity. Components of goal setting interventions were also extracted. RESULTS: Nine publications and 35 meta-analysis models were identified, investigating 25 health outcomes. Of the 35 meta-analyses, none found strong evidence and three provided some suggestive evidence on symptom reduction and perceived well-being. There was weak evidence for effects on eight health outcomes (HbA1c, self-efficacy, depression, anxiety, distress, medication adherence, health-related quality of life and physical activity), with the rest classified as non-significant. Half of the meta-analyses had high level of heterogeneity. CONCLUSION: Goal setting by itself affects outcomes of chronic diseases only to a small degree. This is not unexpected finding as changing outcomes in chronic diseases requires a complex and individualized approach. Implementing goal setting in a standardized way in the management of chronic conditions would seem to be a way forward.IMPLICATIONS FOR REHABILITATIONThe link between goal setting and health outcomes seems to be weak.Some levels of positive behavioural change could be of benefits to patients as seen by improved self-efficacy, patients' satisfaction and overall quality of life.Systematic and consistent application of personalized goal-oriented interventions considering patient's readiness to change could better predict improved outcomes.Incorporation of various goal setting components while actively engaging patient and/or their care givers in the process could appraise how goal setting could help with challenges in faced by people living with chronic conditions in different areas.

Effectiveness of a personalized health profile on specificity of self-management goals among people living with HIV in Canada: findings from a blinded pragmatic randomized controlled trial.

PURPOSE: To estimate among people living with chronic HIV, to what extent providing feedback on their health outcomes will affect the number and specificity of patient-formulated self-management goals. METHODS: A personalized feedback profile was produced for individuals enrolled in a Canadian HIV Brain Health Now study. Goal specificity was measured by total number of specific words (matched to a domain-specific developed lexicon) per person-words using text mining techniques. RESULTS: Of 176 participants enrolled and randomly assigned to feedback and control groups, 110 responses were received. The average number of goals was similar for both groups (3.7 vs 3.9). The number of specific words used in the goals formulated by the feedback and control group were 642 and 739, respectively. Specific nouns and actionable verbs were present to some extent and "measurable" and "time-bound" words were mainly missing. Negative binomial regression showed no difference in goal specificity among groups (RR = 0.93, 95% CI 0.78-1.10). Goals set by both groups overlapped in 8 areas and had little difference in rank. CONCLUSION: Personalized feedback profile did not help with formulation of high-quality goals. Text mining has the potential to help with difficulties of goal evaluation outside of the face-to-face setting. With more data and use of learning models automated answers could be generated to provide a more dynamic platform.

Reducing research wastage by starting off on the right foot: optimally framing the research question.

PURPOSE: Strongly framed research questions are clear as to the population (P), the exposures or interventions (E/I), comparison groups (C), outcomes (O), time when relevant (T), and what the investigator wants to know. A solid framework sets up the measurement model, analysis, and anticipated results. The purpose of this study was to estimate the extent to which research questions in journals that focused on patient-reported outcome measures (PROM) and quality of life (QOL) are clear. METHODS: All 440 research articles published in four PROM journals in 2020. excluding reviews, psychometric, and qualitative papers, were reviewed. Research questions were classified as: (i) adequately framed (ii) poorly framed; or (iii) unframed based on clarity criteria. Examples from each journal were presented and reframed to match results in the article. RESULTS: Of 440 articles, 195 (44.3%) were classified as adequately framed; 230 (52.2%) as poorly framed; and 15 (3.4%) as unframed. There was heterogeneity across journals (Chi-square: 20.8; 6 df; p = 0.002). Only 29% were framed according to what the investigators wanted to know; 72% were framed like a "to do" list; and 6% were framed as a research agenda. CONCLUSION: Almost half of the questions were poorly framed or unframed a practice that could contribute to research wastage. Even "adequately framed" questions rarely stated what they wanted to know a priori, increasing the risk of biased reporting. Researchers, reviewers, and editors should encourage the use established frameworks for research questions.

Quality of life measures in pediatric multiple sclerosis: a systematic review and meta-analysis.

AIM: To identify generic measures used to measure quality of life (QoL) in pediatric multiple sclerosis research, estimate an overall score of children and adolescents with pediatric multiple sclerosis, and compare the scores to scores of typically developing children and adolescents. METHOD: A systematic search was conducted on four databases. All studies were included if: the sample was children with pediatric demyelinating disorders; self-reported QoL/health-related quality of life (HRQoL) measures or results were reported; and the mean age of the sample was below 21 years. Quality of the included articles was appraised using the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist and the Mixed Methods Appraisal Tool checklist. A meta-analysis was also conducted. RESULTS: A total of 12 full-text articles were included. Content analysis showed that many components of QoL were not included in the measures. Seven studies were included in the meta-analysis. The meta-analyzed score was 75.7 (95% confidence interval 71.2-80.3) with a pooled standard deviation of 16.6. Scores of typically developing children and children with pediatric multiple sclerosis were similar. INTERPRETATION: Most measures assessed HRQoL and not QoL. Development of a condition-specific measure of QoL for children and adolescents with pediatric multiple sclerosis would make an important contribution to the field. What this paper adds Health-related quality of life (HRQoL) measures were used to measure quality of life in pediatric multiple sclerosis. HRQoL scores in pediatric multiple sclerosis were similar to typically developing children and adolescents.

Development and usability of a feedback tool, "My Personal Brain Health Dashboard", to improve setting of self-management goals among people living with HIV in Canada.

OBJECTIVE: (1) To develop a personalized health outcome profile as a feedback tool to improve self-management in people living with chronic conditions such as HIV and (2) to evaluate the interpretability and usefulness of the feedback tool for setting specific goals. METHODS: The development of "My Personal Brain Health Dashboard" was inspired by the knowledge-to-action framework. A health outcome profile was computer generated in SAS from the outcome measures, at first and last recorded visits, of each person enrolled in the +BHN cohort from five sites in Canada. The Wilson-Cleary model framed the outcome measurement strategy. Single actionable items with evidence of life impact were chosen. The response option from the original item was the person's value and the optimal level was provided to help persons compare their results to an optimal target. Cognitive interviews were conducted with members of HIV community. Appropriateness of the Dashboard for goal-setting was tested by asking participants to write specific goals according to the Dashboard they were given. RESULTS: Fifteen respondents were recruited from Montreal and Vancouver. Items most endorsed to be changed were cognition, pain, and body mass index. 80% found the Dashboard useful for setting health-related goals. A total of 85 goals were set, the text of which was mined to create a lexicon for scoring goal quality in future endeavours. CONCLUSION: This study was the preparatory phase for a future trial on a method to stimulate setting specific goals. The future trial would provide a thorough understanding of the quality of person-defined goals.

Parents' Experiences of Support in NICU Single-Family Rooms.

PURPOSE: This study aimed to explore support for mothers and fathers in single-family rooms (SFRs) of a NICU. DESIGN: A qualitative descriptive design was employed. SAMPLE: A convenience sample of 15 parents (nine mothers, six fathers) were recruited from a Level III NICU. METHOD: During their infants' hospitalization, each parent recorded their thoughts and feelings regarding support whenever appropriate over a period of 48 hours using Handy Application to Promote Preterm infant happY-life (HAPPY), an android recording application. RESULTS: Parents felt supported when staff facilitated their learning in a collaborative manner, fostered their optimism, and provided situational assistance. Continuity and consistency of care and presence were important characteristics of supportive nursing care. Though SFRs offered privacy for parents to learn and to be with their infants, the design limited parental access to nursing and medical staff, which sometimes prevented parents from receiving adequate support and partaking in decision making concerning their infants' care.