Quality of life in children suffering from headaches: a systematic literature review.

BACKGROUND: Headaches are the most common complaints among pediatric populations. Determining the cause and appropriate treatment for headaches may be challenging and costly, and the impact of headaches on the lives of patients and their families is not well understood. OBJECTIVE: A systematic literature review was conducted to examine what PROMs are currently used, and to identify quality of life (QoL) concepts important to children suffering from headaches and any known determinants of QoL. METHODS: Embase, Medline, Web of Science, CINAHL, EBSCOhost, PsychINFO, Cochrane CENTRAL and Google Scholar were searched from their inception through to June 2021. Studies investigating QoL, using a validated outcome measure in pediatric patients with headaches, were included. Relevant studies were identified through title and abstract screening and full text review by two independent reviewers. A citation review of included studies was performed. QoL concepts were extracted from the outcome measures that were used in each study to develop a preliminary conceptual model of QoL in children suffering from headaches. Determinants of QoL were also identified and categorized. RESULTS: A total of 5421 studies were identified in the search. Title and abstract screening resulted in the exclusion of 5006 studies. Among the 415 studies included for full text review, 56 were eligible for final analysis. A citation review resulted in the addition of five studies. Most studies were conducted in high-income countries and included a patient-sample accordingly (n = 45 studies). Sixteen different PROMs were identified in the included studies, of which the PedsQL was used the most often (n = 38 studies). The most common health concepts reported were physical functioning (n = 113 items), social and psychological wellbeing (N = 117, n = 91 resp.). Twenty-five unique determinants of QoL were extracted from the included studies. CONCLUSION: There is a need for a condition-specific PROM to facilitate the measurement of QoL outcomes in the pediatric headache population. A conceptual model was developed based on the findings from the health concepts. Findings from this review could be used for future qualitative interviews with pediatric patients with headaches to elicit and refine important QoL concepts.

A catalyst for transforming health systems and person-centred care: Canadian national position statement on patient-reported outcomes.

Background: Patient-reported outcomes (pros) are essential to capture the patient's perspective and to influence care. Although pros and pro measures are known to have many important benefits, they are not consistently being used and there is there no Canadian pros oversight. The Position Statement presented here is the first step toward supporting the implementation of pros in the Canadian health care setting. Methods: The Canadian pros National Steering Committee drafted position statements, which were submitted for stakeholder feedback before, during, and after the first National Canadian Patient Reported Outcomes (canpros) scientific conference, 14-15 November 2019 in Calgary, Alberta. In addition to the stakeholder feedback cycle, a patient advocate group submitted a section to capture the patient voice. Results: The canpros Position Statement is an outcome of the 2019 canpros scientific conference, with an oncology focus. The Position Statement is categorized into 6 sections covering 4 theme areas: Patient and Families, Health Policy, Clinical Implementation, and Research. The patient voice perfectly mirrors the recommendations that the experts reached by consensus and provides an overriding impetus for the use of pros in health care. Conclusions: Although our vision of pros transforming the health care system to be more patient-centred is still aspirational, the Position Statement presented here takes a first step toward providing recommendations in key areas to align Canadian efforts. The Position Statement is directed toward a health policy audience; future iterations will target other audiences, including researchers, clinicians, and patients. Our intent is that future versions will broaden the focus to include chronic diseases beyond cancer.

Development of a new patient-reported outcome measure to evaluate treatments for acne and acne scarring: the ACNE-Q.

BACKGROUND: Psychosocial concerns represent important outcomes in studies of treatments for acne and acne scarring. Also important, but largely overlooked, is the concept of appearance. OBJECTIVES: To design an acne-specific patient-reported outcome measure for acne and acne scarring. METHODS: We used a mixed-methods approach. Phase I involved 21 patient interviews that were audio-recorded, transcribed and coded. Concepts were identified and developed into scales that were refined through 10 cognitive interviews and input from 16 clinical experts. Phase II involved data collection at hospital and community-based dermatology clinics in Canada and the U.S.A. Eligible participants were aged 12 years and older with acne and/or acne scars on the face, chest and/or back. Rasch Measurement Theory (RMT) analyses were performed to examine psychometric properties. RESULTS: Phase I led to the development of seven scales that measure appearance of facial skin, acne (face, chest and back) and acne scars, acne-specific symptoms and appearance-related distress. In phase II, 256 patients completed the ACNE-Q. RMT analysis provided evidence that the items of each scale worked together conceptually and statistically. Most participants scored within the range of measurement for each scale (81·9-93·1%). Reliability was high, with person separation index values and Cronbach alpha values > 0·90 for the appearance scales, ≥ 0·87 for appearance-related distress and ≥ 0·75 for symptoms. Worse scores on appearance scales correlated with worse symptom scores and more appearance-related distress. CONCLUSIONS: The ACNE-Q is a rigorously developed instrument that can be used to measure appearance and other patient-centred concerns. What's already known about this topic? Acne is a common dermatological condition that can have an important impact on psychosocial function. Current patient-reported outcome measures specific to acne focus mostly on measuring psychological and social impact. What does this study add? The ACNE-Q provides a set of independently functioning scales that measure appearance of facial, back and chest acne, acne scarring and facial skin. Additional scales measure appearance-related distress and acne symptoms. What are the clinical implications of this work? ACNE-Q provides the dermatology community with a rigorously developed patient-reported measure for acne that can be applied in clinical trials, research and patient care. The measurement of appearance by ACNE-Q scales is more comprehensive than in other instruments providing important information on appearance of their acne and/or acne scars from the patient perspective.

FACE-Q Skin Cancer Module for measuring patient-reported outcomes following facial skin cancer surgery.

BACKGROUND: The patient's perspective of their facial scar after skin cancer surgery influences perception of care and quality of life (QoL). Appearance satisfaction after surgery is also an important but often overlooked treatment outcome. OBJECTIVES: To report the psychometric validation of the FACE-Q Skin Cancer Module consisting of five scales, measuring appearance satisfaction (Satisfaction with Facial Appearance, Appraisal of Scars), QoL (Cancer Worry, Appearance-related Psychosocial Distress) and the patient experience (Satisfaction with Information: Appearance). METHODS: Participants underwent Mohs surgery for facial basal or squamous cell carcinoma or excision of early facial melanoma. Cohort 1 received a set of scales before and after surgery. Cohort 2 received the scales on two occasions in the postoperative period for test-retest reliability. Rasch measurement theory was used to select (item-reduce) the most clinically meaningful items for the scales. Reliability, validity, floor and ceiling effects and responsiveness were also analysed. RESULTS: Of 334 patients, 209 (response rate 62·6%) were included. Rasch analysis reduced the total scale items from 77 to 41. All items had ordered thresholds and good psychometric fit. Reliability was high (Person separation index and Cronbach's α ≥ 0·90) and scales measuring similar constructs were correlated. High floor and ceiling effects were seen for the scales. The Cancer Worry scale demonstrated responsiveness (P = 0·004). CONCLUSIONS: The FACE-Q Skin Cancer Module meet the requirements of the Rasch model providing linearized measurement. Discriminating between patients with minimal appearance or worry impairment may be a limitation. The scales can be used for larger validation studies, clinical practice and research.

Development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: the TRANSITION-Q.

AIM: To develop a generic self-management skills scale for use with adolescents diagnosed with a chronic health condition who are aged 12 to 18 years. BACKGROUND: There is a lack of methodologically sound scales for healthcare teams to use to measure self-management skills in adolescents with chronic conditions transitioning to adult care. METHODS: Adolescents aged 12 to 18 years with a broad range of chronic health conditions, including neurodevelopmental conditions, were recruited from May to August 2013 from nine outpatient clinics at McMaster Children's Hospital (Canada). Thirty-two participated in a cognitive interview, and 337 completed a questionnaire booklet. Interviews were used to develop the TRANSITION-Q. Rasch measurement theory (RMT) analysis was used to identify items that represent the best indicators of self-management skills. Traditional psychometric tests of measurement performance were also conducted. RESULTS: The response rate was 92% (32/32 cognitive; 337/371 field test). RMT analysis resulted in a 14-item scale with three response options. The overall fit of the observed data to that expected by the Rasch model was non-significant, providing support that this new scale measured a unidimensional construct. Other tests supported the scale as scientifically sound, e.g. Person Separation Index = 0.82; good item fit statistics; no differential item function by age or gender; low residual correlations between items; Cronbach's alpha = 0.85; test-retest reliability = 0.90; and tests of construct validity that showed, as hypothesized, fewer skills in younger participants and in participants who required assistance to complete the scale. Finally, participants who agreed they are ready to transfer to adult healthcare reported higher TRANSITION-Q scores than did participants who disagreed. CONCLUSIONS: The TRANSITION-Q is a short, clinically meaningful and psychometrically sound scale. This generic scale can be used in research and in paediatric and adolescent clinics to help evaluate readiness for transition.

Caregiving, single parents and cumulative stresses when caring for a child with cancer.

BACKGROUND: Single parents whose children have cancer are a marginalized group who report less family centred care, and therefore, less quality cancer care for their children. As such, the aims of this study were to explore how single parents of children with cancer describe their caregiving experiences and to understand their contextual life stressors. METHODS: A constructivist grounded theory method was used. Qualitative interviews with 29 single parents of children with cancer who were at least 6 months post-diagnosis were recruited between November 2009 and April 2011 from four hospitals across Canada. Line-by-line coding was used to establish codes and themes and constant comparison was used to establish relationships among emerging codes and conceptual themes. RESULTS: The first set of findings report on caregiving duties including: emotional tasks, informational tasks and physical tasks. The second set of findings report on the contextual picture of parent's lives including their living conditions, their physical and mental health and their family histories of disruption, trauma and disease. CONCLUSIONS: Single parents caring for children with cancer were found to experience several cumulative stressors in addition to the current strain of caring for a child with cancer. The synergy of these cumulative stresses with the added strain of caregiving for a child with cancer may have long-term health and financial implications for parents. Broad-based policy interventions should focus on relieving the chronic strains associated with being a single parent of a child with cancer.

Understanding the healthcare experiences of teenaged cancer patients and survivors.

BACKGROUND: Despite literature supporting a client and family-centred approach to healthcare delivery in paediatric facilities, there is little information about healthcare delivery from the perspective of teenagers in the oncology setting. The objective of this study is to describe the healthcare experiences of teenagers with cancer. METHODS: As part of a larger study on teen-centred care delivery in paediatric oncology, a survey included several open-ended questions to learn about the following: (1) what teenagers liked about the cancer care they received; (2) what they disliked about the cancer care received; and (3) what they would include if they could design the perfect cancer centre for teenagers. The survey was completed by 200 teenagers (aged 12-20 years) from three paediatric hospitals in Canada. Answers to these questions were coded and developed into themes and subthemes using a thematic analysis approach. RESULTS: The number of patients providing answers was 89% for question 1, 63% for question 2 and 68.5% for question 3. Likes and dislikes were conceptualized in terms of four key themes as follows: (1) staff at the treatment centre; (2) the cancer care they received; (3) the treatment centre itself; and (4) social activities. The most common suggestions for the perfect cancer centre included having access to better entertainment, more social opportunities to interact with peers, and a more comfortable environment for themselves and their families. CONCLUSION: Understanding teenagers' experiences in the paediatric oncology setting provides information that could be used to shape the delivery of healthcare in a way that is tailored to their needs. Further research in this area is required in order to improve existing oncology care.

Family-centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology.

BACKGROUND: Over the past two decades, there is increasing emphasis being placed upon providing family-centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. METHODS: This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post-diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line-by-line, focused and theoretical coding, and the use of the constant comparison method. RESULTS: Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co-ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health-related information directly with their child. CONCLUSIONS: In order to successfully provide family-centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit.

Quality of life domains affected in children with developmental coordination disorder: a systematic review.

The quality of life (QOL) of children with developmental coordination disorder (DCD) is largely unknown, but evidence suggests that multiple QOL domains are affected by the disorder. While DCD is primarily considered a motor disorder, multiple studies have reported psychological and social concerns in children with this condition. Our primary aim was to present the current state of the evidence regarding the physical, psychological, and social QOL domains that can be affected in children with DCD. Systematic review of articles from seven databases through November 2010 (MEDLINE, EMBASE, CINAHL, PsycINFO, ERIC, CDSR, DARE) was conducted. Search terms included developmental coordination disorder, dyspraxia, quality of life, life satisfaction, well-being, activities of daily living, and participation. Two independent reviewers screened titles, abstracts, and full-text articles. Studies meeting the following criteria were selected: (1) sample comprised solely of individuals with coordination difficulties consistent with DCD; (2) outcome measures related to physical, psychological, or socials domains of QOL; and (3) articles published in English. Data were extracted by one author and verified by a second. Outcomes were categorized according to physical, psychological and social domains of QOL and study quality was rated by case definitions of DCD based on diagnostic criteria as per the Diagnostic and Statistical Manual - 4th edition. Forty-one articles were included. Most studies reported significantly poorer results in physical, psychological and social functioning in children with DCD compared with peers. Despite the impact of DCD on multiple domains, only one study used a QOL measure as an outcome. Although DCD impacts several QOL domains, the QOL of children with this disorder remains largely unknown. The next critical step is for clinicians and researchers to use QOL measures to gather information on how DCD may affect the QOL of children with this disorder.

Evaluating family-centred service in paediatric oncology with the measure of processes of care (MPOC-20).

BACKGROUND: In order to evaluate the family-centeredness of paediatric oncology services, a psychometrically sound measure of family-centred services is needed. We performed a comprehensive evaluation of the psychometric properties of the 20-item Measure of Processes of Care (MPOC-20) in parents of children undergoing treatment for cancer at five paediatric oncology centres in Canada. METHODS: The sample included 411 parents (80% response rate). Exploratory factor analysis was used to determine the best way to group the items into scales. Psychometric tests were used to examine data quality, targeting, internal consistency reliability, within-scale construct validity and known-groups validity. RESULTS: Exploratory factor analysis identified two factors: a summary measure of family-centred services and a scale measuring activities that meet parents' general informational needs. Scores spanned the entire scale range, floor and ceiling effects were low, and the sample distribution was not unduly skewed. Scales showed acceptable internal consistency reliability (Cronbach's alphas > or =0.93). Known-group hypotheses supported the scales' ability to differentiate between groups hypothesized to differ. Moderate effect sizes were found when MPOC-20 scale scores for parents and for children with good quality of life were compared with those with poor quality of life. CONCLUSIONS: The MPOC-20 is the only evaluated instrument currently available to measure family-centred services in paediatric oncology. Paediatric cancer programmes can now use this tool to determine parental perception of the extent to which services are family-centred.

Perinatal characteristics and parents' perspective of health status of NICU graduates born at term.

OBJECTIVE: Long-term outcomes of preterm infants have been extensively studied, but few studies have examined long-term outcomes of term infants who require neonatal intensive care unit (NICU). Our objectives were to assess perinatal characteristics and health status of preschool age term babies using data from a population-based study of NICU graduates. STUDY DESIGN: Retrospective cross-sectional survey. All babies were born in 1996 to 1997 in BC (Canada). The Health Status Classification System Preschool (HSCS-PS) questionnaire was completed by parents at 42 months of age. HSCS-PS was grouped in four categories (neurosensory, learning, motor and quality of life). Logistic regression was used to identify perinatal risk factors associated with moderate/severe problems at 42 months of age. RESULT: Completed surveys were received for 261 term NICU survivors and 393 control children. Term infants represent 32% of all NICU admissions. Mean birth weight of NICU graduates was 3458 g (s.d.=600 g). Median length-of-stay in NICU was 5 days. At 42 months, the NICU group had significantly more problems on the HSCS-PS as compared to the full-term healthy infants in neurosensory, motor and learning/remembering. Moderate/severe health status problems were associated with congenital anomalies (odds ratio (OR), 3.2; confidence interval (CI): 1.3 to 7.8); smoking status (OR, 2.7, CI: 1.1 to 6.6) and SNAP score (OR, 1.04; CI: 1.0 to 1.1). CONCLUSION: Term babies admitted to NICUs may have significant health issues in childhood. Greater attention needs to be paid to long-term outcomes of term NICU graduates. Further study is warranted to address which NICU term survivors warrant secondary and/or tertiary-level neurodevelopmental follow-up.

Agreement between parent and child report of quality of life in children with attention-deficit/hyperactivity disorder.

BACKGROUND: There is little information in the research literature of agreement between parent and child in reports of child quality of life (QOL) for a sample of children diagnosed with attention-deficit/hyperactivity disorder (ADHD). The aim of our study was to determine whether parent and child concordance is greater for physical domains of QOL than for psychosocial domains; whether parents rate their child's QOL better or poorer than their child's ratings; and whether concordance is related to demographic, socioeconomic or clinical factors. METHODS: The study was a questionnaire survey of children aged 10-17 referred to the ADHD clinic and diagnosed with ADHD in the province of British Columbia (Canada) between November 2001 and October 2002 and their parent. RESULTS: Fifty-eight children diagnosed with ADHD and their parents completed our study questionnaire. The main outcome measure was the Child Health Questionnaire, which permitted comparisons on eight QOL domains and one single item. Intraclass correlation coefficients were moderate for five domains (range from 0.40 to 0.51), and good for three domains (range from 0.60 to 0.75). Children rated their QOL significantly better than their parents in four areas and poorer in one. Standardized Response Means indicated clinically important differences in mean scores for Behaviour and Self-esteem. Compared with population norms, across most domains, children with ADHD reported comparable health. Discrepancies between parent-child ratings were related to the presence of a comorbid oppositional/defiant disorder, a psychosocial stressor and increased ADHD symptoms. CONCLUSIONS: Although self-report is an important means of eliciting QOL data, in children with ADHD, given the discrepancies in this study between parent and child report, measuring both perspectives seems appropriate.

Measuring quality of life in people referred for specialist care of acne: comparing generic and disease-specific measures.

OBJECTIVE: Our purpose was to compare 3 approaches to the measurement of quality of life in patients referred for specialist care of acne. METHODS: A questionnaire was sent to 130 patients referred for management of their acne. Follow-up questionnaires were sent 4 and 12 months after treatment began. The questionnaire contained a generic index measure (EuroQol EQ-5D), a generic profile measure (Short Form 36), and a disease-specific measure (Dermatology Life Quality Index). Pretreatment results for the EQ-5D were compared with normative data. The responsiveness of the EQ-5D was compared with that of the other measures. RESULTS: Before treatment, the sample reported substantially more pain/discomfort and anxiety/depression on the EQ-5D compared with a population sample. The disease-specific measure was more responsive to change compared with both generic measures. CONCLUSION: Our study highlights the importance of combining information from generic measures with information from instruments designed specifically for use in people with skin disease.