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1.
Front Pain Res (Lausanne) ; 5: 1291374, 2024.
Article in English | MEDLINE | ID: mdl-38638535

ABSTRACT

Background: Chronic cancer-related pain (CRP) can have a significant negative impact on quality of life. Mindfulness is hypothesized to mitigate chronic CRP by regulating both physical and emotional resistance to pain. In recent years, there has been interest in the use of virtual reality (VR) to deliver mindfulness meditation. VR provides an immersive and engaging environment, which may enhance one's focused attention to present-moment experiences, potentially making mindfulness less effortful and more efficacious for individuals with chronic pain. There has been little research in this area for people with a history of cancer. Objective: The aim of this mixed methods study is to evaluate the feasibility of a VR-guided mindfulness (VRGM) intervention offered to adult cancer survivors with chronic CRP. Methods: This mixed methods feasibility study will employ a single-arm, pretest-posttest design with semistructured interviews. In total, 15 cancer survivors will be enrolled in a 6-week home-based intervention that consists of 10-15 min of daily VRGM practice. The primary outcome is feasibility as assessed by accrual rates, retention in the study, intervention adherence, questionnaire completion, and side effect rates. Participants will be assessed on psychosocial outcome measures (i.e., pain, sleep, depressive and anxiety symptoms, fatigue, quality of life, and mindfulness) before and after the intervention, and 6 weeks post intervention (follow-up). Changes in pain will be described in relation to levels of immersion and presence in the virtual environment, trait mindfulness, and amount of VRGM practice. Qualitative information will provide subjective detail on participants' experience with VRGM to complement quantitative data. This study has been approved by the Health Research Ethics Board of Alberta Cancer Committee (HREBA.CC-20-0411). Conclusions: This novel intervention provides a potential alternative treatment to pharmacological pain management. Results from this study may inform future larger VGRM trials for chronic CRP to help reduce suffering in people with cancer. Study findings will be disseminated through open access publications, traditional conference presentations, professional cancer organizations, and social media platforms.

2.
J Cancer Surviv ; 18(1): 68-78, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37340209

ABSTRACT

PURPOSE: Youth diagnosed with acute lymphoblastic leukemia (ALL) and their caregiver's experience a myriad of challenges in all domains of health that extend beyond treatment. Yet, little is known about how the cancer experience, and recollections associated with the experience, impact survivorship. We explored pediatric ALL survivors' and their caregivers' autobiographical memories of the cancer experience from diagnosis onwards. METHODS: Survivors of ALL, and one of their caregivers, were recruited through a local clinic. Survivors and their caregivers completed a demographic survey and semi-structured, private, one-on-one interviews. Demographic information were analyzed using descriptive statistics. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis at the level of the individual and dyad. RESULTS: Insights from survivors (N = 19; Mage = 15.3 years) and their caregivers (n = 19; Mage = 45.4 years) were captured. Analyses generated two themes contingent on role (i.e., survivor or caregiver): (1) It is hard to recall my cancer experience and (2) We did as much as we could to manage our child's cancer experience and two unified themes (present in both survivors and their caregivers): (3) It took a village to get through the cancer experience and (4) The cancer diagnosis and experience has had a lasting impact. CONCLUSIONS: Findings highlight the varied and long-lasting ways cancer impacts survivors of pediatric ALL and their caregivers. Survivors had difficultly remembering their experience or felt that information was withheld and were acutely aware of their caregiver's distress. Caregivers were cautious and intentionally limited the information they shared. IMPLICATIONS FOR CANCER SURVIVORS: Survivors desired to be included within, or told about, decisions related to their healthcare and were acutely aware of their caregiver's distress. Efforts should be made to communicate with survivors (from diagnosis onward) openly and to consider strategies to minimize the short- and long-term impacts of pediatric ALL among survivors and their caregivers.


Subject(s)
Cancer Survivors , Memory, Episodic , Neoplasms , Adolescent , Humans , Child , Middle Aged , Survivors , Parents , Neoplasms/therapy , Caregivers
3.
JMIR Res Protoc ; 12: e45804, 2023 Aug 01.
Article in English | MEDLINE | ID: mdl-37526959

ABSTRACT

BACKGROUND: There are over 500,000 survivors of childhood cancer in North America alone. One in 4 survivors experiences chronic pain after treatment has been completed. Youths with chronic pain report increased anxiety, depression, activity limitations, and sleep disturbances. An 8-week web-based cognitive behavioral treatment for chronic pain (Web-Based Management of Adolescent Pain [WebMAP]) has demonstrated a reduction in pain in youths but has not yet been explored in survivors. OBJECTIVE: The objectives of this study are to (1) test the feasibility and acceptability of WebMAP for a sample of survivors with chronic pain and their parents; (2) assess the acceptability of WebMAP using qualitative interviews; (3) assess WebMAP's effect on activity limitations, pain intensity, depression and anxiety symptoms, and sleep disturbances; and (4) assess WebMAP's effect on parent pain catastrophizing and parental response to their child's pain. METHODS: A single-arm mixed methods pre-post intervention study design will be used. Participants will be 34 survivors and at least one of their parents or caregivers. Inclusion criteria are (1) a cancer history, (2) current age of 10-17 years, (3) >2 years post treatment or >5 years post diagnosis, (4) pain present over prior 3 months impairing >1 area of daily life and occurring >1 time per month, and (5) computer access with broadband internet. Survivors will complete a pretreatment questionnaire, which will include the following: the Child Activity Limitations Interview, the pain intensity Numerical Rating Scale, Patient-Reported Outcomes Measurement Information System (PROMIS)-Pain Interference, Anxiety, Depression, Insomnia Severity Index, and Adolescent Sleep Wake Scale. Parents will complete the Pain Catastrophizing Scale-Parent Version and the Adult Responses to Child Symptoms. Upon completion of pretreatment questionnaires (T0), survivors will begin WebMAP. After the 8-week intervention, survivors will complete the same measures (T1), and at 3-month follow-up (T2). Posttreatment interviews will be conducted to determine acceptability. Feasibility will be assessed via recruitment and retention rates. Treatment engagement will be measured by number of modules completed. Pre-post outcome data will be assessed using linear mixed models. Qualitative data will be analyzed using thematic analysis. Patient partners will be involved in study design, recruitment, interpretation of results, and knowledge translation. RESULTS: This study has been funded in January 2022. Data collection started in May 2022 and is projected to end in August 2023. We have enrolled 10 participants as of December 2022. CONCLUSIONS: Investigating whether WebMAP is useful to survivors will be an important step in improving pain management in this population. TRIAL REGISTRATION: ClinicalTrials.gov NCT05241717; https://clinicaltrials.gov/ct2/show/NCT05241717. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/45804.

4.
Support Care Cancer ; 31(7): 415, 2023 Jun 24.
Article in English | MEDLINE | ID: mdl-37354228

ABSTRACT

PURPOSE: Acute lymphoblastic leukemia (ALL) is the most common cancer diagnosed among individuals <14 years of age. The disease and its treatments are associated with negative side effects, including pain, which is both prevalent and distressing. Little is known about pain experiences in this population, which has slowed efforts to identify strategies to mitigate and cope with this adverse effect. This study sought to explore youth's and their caregiver's experiences with, and perspectives of, pain in the context of pediatric cancer treatment. METHODS: Youth and one of their caregivers were recruited through (omitted for peer review). Following completion of a demographic survey, youth and one of their caregivers were interviewed separately using a semi-structured, one-on-one interview guide. Demographic information was analyzed with descriptive statistics, and interviews were transcribed verbatim and analyzed using reflexive thematic analysis. RESULTS: Youth (n = 19; Mage = 15.3 years) and caregiver (n = 19; Mage = 45.4 years) perspectives informed 4 themes: (1) my pain experience is nuanced, multidimensional, and is changing over time; (2) the cancer experience has changed the way I experience and respond to pain; (3) I used strategies to manage pain, and not all of them worked; and (4) my pain experience was influenced by people around me. CONCLUSIONS: Findings extend prior work, suggesting that pain is common, distressing, multidimensional, and influenced by social context. Results highlight the number of ways in which youth and their caregivers attempt to manage their pain and factors influencing pain experiences. Greater efforts are needed to address pain during cancer treatment and survivorship.


Subject(s)
Caregivers , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Humans , Child , Adolescent , Middle Aged , Pain/etiology , Social Environment , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy , Qualitative Research
5.
Pain Rep ; 7(3): e1000, 2022.
Article in English | MEDLINE | ID: mdl-35415383

ABSTRACT

Introduction: Pain is common during childhood cancer treatment, can persist into survivorship, and can negatively affect health-related quality of life in survivors of childhood cancers (SCCs). Objective: The objective of this brief report was to assess pain frequency, pain-related worry, and their (unique) associations with health-related quality of life in SCCs. Methods: One hundred eleven SCCs (52% female individuals, M age: 17.67 years, range 8-25 years) completed self-report measures of pain frequency, pain-related worry, and health-related quality of life. Results: More than two-thirds (70%) of SCCs reported pain in the previous month (M = 1.39, SD = 1.17), and 15% reported experiencing pain often or almost always. More than one-third (39%) reported worrying about pain as a sign of cancer recurrence (M = 0.73, SD = 1.07), and 9% reported worrying about pain a lot or a whole lot. In multivariate regression models that controlled for sex, age at diagnosis, and time off treatment, both pain frequency and pain-related worry were significantly associated with physical health-related quality of life, indicating that they contribute unique variance to health-related quality of life after childhood cancer. For emotional health-related quality of life, pain frequency was no longer a significant predictor once pain-related worry was added to the model, indicating that pain-related worry may be particularly important for understanding emotional health-related quality of life. Conclusion: Postcancer pain may contribute to health-related quality of life through multiple mechanisms, including by triggering concerns of recurrence. There is a need for clinical interventions that target both the frequency of pain (eg, behavioral interventions) and pain-related worry (eg, psychoeducation and cognitive interventions) to improve health-related quality of life after childhood cancer.

6.
Cancers (Basel) ; 14(3)2022 Jan 29.
Article in English | MEDLINE | ID: mdl-35158977

ABSTRACT

There is a growing focus on describing both negative and positive outcomes in the wake of childhood cancer. The purpose of this study was to describe and explore the relationships between posttraumatic stress symptoms (PTSS) and posttraumatic growth (PTG) among children living beyond cancer and one of their parents. As part of a larger online survey, 113 children (Mage at time of study = 15.82 (SD = 4.81); Mage at diagnosis = 5.86 (SD = 4.66)) and one of their parents completed questionnaires assessing PTSS and PTG. Descriptive statistics were used to describe the sample and levels of PTSS and PTG. Data were z-transformed and analyzed using bivariate correlations and t-tests. An actor-partner interdependence model (APIM) was used to test whether children's and their parents' PTSS was associated with their own PTG (actor effect) and the others' PTG (partner effect). PTSS was low and PTG was moderate in this sample relative to scale ranges. There were no significant differences between the children's and their parents' PTSS (p = 0.535) or PTG (p = 0.534). Results from the APIM showed no significant actor effects (p = 0.185). A significant overall partner effect (p = 0.020) emerged. Lower PTSS for children was associated with greater PTG for their parents (b = -0.29, p = 0.018), but parent's PTSS was not associated with children's PTG (p = 0.434). This sample reported similar levels of PTSS and PTG to that which has been reported in the literature. Children and their parents' scores on PTSS and PTG measures were not significantly different from one another. Children's PTSS was negatively associated with their parents PTG, illuminating the ways in which PTSS and PTG may be related in the context of childhood cancer. Exploring family-based strategies to reduce PTSS and enhance PTG may be warranted, though further studies are required.

7.
Psychooncology ; 31(6): 911-919, 2022 06.
Article in English | MEDLINE | ID: mdl-35018689

ABSTRACT

OBJECTIVE: Fear of cancer recurrence (FCR) is a common and distressing psychosocial concern for adult cancer survivors. Data on this construct in child survivors is limited and there are no validated measures for this population. This study aimed to adapt the Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF) for survivors of childhood cancer aged 8-18 years (Fear of Cancer Recurrence Inventory-Child version [FCRI-C]) and their parents (Fear of Cancer Recurrence Inventory-Parent version [FCRI-P]) to self-report on their own FCR and to examine the initial psychometric properties. METHODS: The FCRI-SF was adapted through expert panel input and cognitive interviews with child survivors <18 years. The factor structure, internal consistency and construct and criterion validity of the FCRI-C and FCRI-P were examined in 124 survivors of childhood cancer (43% female; Mage  = 14.58 years, SD = 2.90) and 106 parents (90% mothers). RESULTS: All FCRI-SF items were retained for the FCRI-C with simplified language. The internal consistencies of the FCRI-C (α = 0.88) and FCRI-P (α = 0.83) were good. Exploratory factor analyses yielded one-factor structures for both measures. Higher scores on the FCRI-C and FCRI-P were associated with greater intolerance of uncertainty and pain catastrophizing. Higher child FCR was also related to more hypervigilance to bodily symptoms. Parents with higher FCR reported contacting their child's doctors and nurses and scheduling medical appointments for their child more frequently. Children reported significantly lower FCR compared to parents. CONCLUSIONS: The FCRI-C and FCRI-P demonstrated strong reliability and preliminary validity. This study offers preliminary data to support the use of the FCRI-C and FCRI-P to measure FCR in survivors of childhood cancer aged 8-18 years and their parents.


Subject(s)
Cancer Survivors , Adult , Cancer Survivors/psychology , Child , Fear/psychology , Female , Humans , Male , Neoplasm Recurrence, Local/psychology , Parents , Phobic Disorders , Reproducibility of Results , Surveys and Questionnaires , Survivors
8.
Support Care Cancer ; 30(3): 2283-2292, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34719739

ABSTRACT

PURPOSE: The revised Psychosocial Assessment Tool (PATrev) is a common family-level risk-based screening tool for pediatric oncology that has gained support for its ability to predict, at diagnosis, the degree of psychosocial support a family may require throughout the treatment trajectory. However, ongoing screening for symptoms and concerns (e.g., feeling alone, understanding treatment) remains underutilized. Resource limitations necessitate triaging and intervention based on need and risk. Given the widespread use of the PATrev, we sought to explore the association between family psychosocial risk, symptom burden (as measured by the revised Edmonton Symptom Assessment System (ESAS-r)), and concerns (as measured by the Canadian Problem Checklist (CPC)). METHODS: Families (n = 87) with children ≤ 18 years of age (M = 11.72, male: 62.1%) on or off treatment for cancer were recruited from the Alberta Children's Hospital. One parent from each family completed the PATrev and the CPC. Participants 8-18 years of age completed the ESAS-r. RESULTS: Risk category (universal/low risk = 67.8%, targeted/intermediate risk = 26.4%, clinical/high risk = 5.7%) predicted symptom burden (F[2, 63.07] = 4.57, p = .014) and concerns (F[2, 82.06] = 16.79, p < .001), such that universal risk was associated with significantly lower symptom burden and fewer concerns. CONCLUSION: Family psychosocial risk is associated with cross-sectionally identified concerns and symptom burden, suggesting that resources might be prioritized for families with the greatest predicted need. Future research should evaluate the predictive validity of the PATrev to identify longitudinal concerns and symptom burden throughout the cancer trajectory.


Subject(s)
Neoplasms , Alberta/epidemiology , Child , Humans , Male , Mass Screening , Medical Oncology , Parents , Symptom Assessment
9.
Support Care Cancer ; 30(1): 295-303, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34278531

ABSTRACT

Many long-term survivors of childhood cancer (LTSCC), individuals at least 5 years post-diagnosis or 2 years post-treatment, experience late- and long-term effects from their treatments, including pain. Yet, pain is poorly understood among LTSCC. The current study aimed to (1a) describe rates and multiple dimensions of pain; (1b) identify patterns of chronic pain; and (2) test correlates of chronic pain in LTSCC. Survivors (n = 140; 48.6% male, Mage = 17.3 years (range = 8-25)) were recruited from across Canada. Between 2017 and 2019, participants completed the Pain Questionnaire, Pain Catastrophizing Scale, Pediatric Quality of Life Inventory, Patient-Reported Outcome Measurement Information System (PROMIS)-Pain Interference, Anxiety, and Depression scales, Child Posttraumatic Stress Scale, the Posttraumatic Stress Disorder Checklist for the DSM-V, and the Cancer Worry Scale. RESULTS: Twenty-six percent of LTSCC reported experiencing chronic pain. Exploratory cluster analysis showed 20% of survivors had moderate to severe chronic pain based on measures of pain intensity and interference. The combination of higher posttraumatic stress symptoms, older current age, more pain catastrophizing, and sex (being female) significantly predicted the presence of chronic pain in logistic regression, χ2 (4, N = 107) = 28.10, p < .001. Higher pain catastrophizing (OR = 1.09; 95% CI = 1.02-1.16), older current age (OR = 1.20; 95% CI = 1.07-1.34), and higher posttraumatic stress (OR = 1.92; 95% CI = 1.01-3.63) were significant predictors of chronic pain. LTSCC should be screened for the presence and magnitude of chronic pain during long-term follow-up visits so appropriate interventions can be offered and implemented. Future research should investigate pain interventions tailored for this population. RELEVANCE: Findings support regular screening for the presence and magnitude of chronic pain in survivors of childhood cancer in long-term follow-up care.


Subject(s)
Cancer Survivors , Neoplasms , Stress Disorders, Post-Traumatic , Adolescent , Adult , Child , Female , Humans , Male , Neoplasms/complications , Pain/epidemiology , Pain/etiology , Quality of Life , Stress Disorders, Post-Traumatic/diagnosis , Stress Disorders, Post-Traumatic/epidemiology , Stress Disorders, Post-Traumatic/etiology , Survivors , Young Adult
10.
Health Psychol ; 40(11): 784-792, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34914483

ABSTRACT

OBJECTIVE: Survivors of childhood cancer experience late effects as a result of their cancer treatment. Evidence for the prevalence of pain as a late effect has been equivocal. This study aimed to describe the prevalence and patterns of pain and biospsychosocial variables that may be related to pain in this population. METHOD: Survivors of childhood cancer (n = 299; 52.5% male; median age = 16.1[4.6-32.6] years; years off therapy = 9.1[2.0-23.7]) were included. Survivors completed a health assessment questionnaire as part of their long-term survivor clinic appointment (median = 3.0 appointments, range = 1.0-7.0) annually or biannually between 2014 and 2017 (Time 1-Time 4). Prevalence of pain was examined and latent class analysis (LCA) was used to identify patterns of pain based on longitudinal reports of pain. Binary logistic regression examined biopsychosocial variables at Time 1 (T1) associated with class membership. RESULTS: Forty-seven percent of survivors reported pain during at least one clinic visit. Headaches were the most prevalent type of pain (26.4%). Survivors of Wilms' Tumor and Ewing's Sarcoma reported the highest prevalence of pain (51.5% and 50.0%, respectively). LCA revealed two clinically relevant profiles: "infrequent or no pain" (74.3%) and "persistent pain" (25.7%). Logistic regression showed that female sex (odds ratio, OR = 2.69, 95% confidence interval, CI [.99, 7.31]), depressive symptomatology at T1 (OR = 2.27, 95% CI [1.31, 3.94]), and drinking to intoxication at T1 (OR = 3.07, 95% CI [1.03, 9.15]), were related to persistent pain. CONCLUSION: Pain is prevalent among survivors of childhood cancer. Future research should characterize the experience of pain in this population so interventions may be developed. Assessment of pain during regular long-term follow-up appointments is warranted. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Child , Female , Humans , Male , Neoplasms/epidemiology , Pain/epidemiology , Prevalence , Survivors
11.
Psychooncology ; 30(7): 1077-1085, 2021 07.
Article in English | MEDLINE | ID: mdl-33544422

ABSTRACT

OBJECTIVE: Somatic symptoms (e.g., pain, fatigue) are common after childhood cancer and are associated with greater fear of cancer recurrence and poorer health-related quality of life (HRQoL). Qualitative studies indicate that survivors of childhood cancer (SCCs) worry about somatic symptoms as indicating cancer recurrence, which could in part explain associations between symptoms and poorer psychosocial outcomes. However, the prevalence, characteristics, and impact of symptom worry has not been quantitatively studied. METHODS: SCCs (N = 111; 52% female; Mage at study = 17.67 years, range = 8-25 years; Mage at diagnosis = 6.70 years) across a variety of diagnoses were recruited from a pediatric cancer center in Canada and completed self-report measures of symptom worry, symptom frequency, general anxiety, fear of cancer recurrence, and HRQoL. RESULTS: A majority (62%) of SCCs worried about at least one symptom as a sign of recurrence. Pain was the most worrisome symptom, but SCCs also reported worrying about symptoms that are rarely associated with cancer recurrence such as hunger, dizziness, and feeling cold. Symptom worry was more strongly associated with fear of cancer recurrence than the mere frequency of those symptoms, and this relationship held while controlling for treatment factors and general anxiety. Symptom worry and frequency each explained unique variance in HRQoL. CONCLUSIONS: Worry about somatic symptoms as a sign of cancer recurrence is common and may be impactful after childhood cancer. Excessive worry about somatic symptoms could be an important target to reduce fear of recurrence and increase HRQoL in SCCs.


Subject(s)
Cancer Survivors , Medically Unexplained Symptoms , Neoplasms , Anxiety/epidemiology , Child , Fear , Female , Humans , Male , Neoplasm Recurrence, Local/epidemiology , Neoplasms/epidemiology , Prevalence , Quality of Life , Surveys and Questionnaires
12.
Curr Oncol ; 28(1): 825-836, 2021 02 07.
Article in English | MEDLINE | ID: mdl-33562251

ABSTRACT

Survivors of childhood cancer (SCCs) are at increased risk of late effects, which are cancer- and treatment-related side-effects that are experienced months to years post-treatment and encapsulate a range of physical, cognitive and emotional problems including secondary malignancies. Perceived health can serve as an indicator of overall health. This study aims to (1) understand how a patient reported outcome (PRO) of perceived health of SCCs compares to controls who have not had a cancer diagnosis and (2) examine the relationships between perceived health and demographic and clinical variables, and health behavior. A total of 209 SCCs (n = 113 (54.10%) males; median age at diagnosis = 6.50 years; median time off treatment = 11.10 years; mean age at study = 19.00 years) were included. SCCs completed annual assessments as part of Long-Term Survivor Clinic appointments, including a question on perceived health answered on a five-point Likert scale. Data were collected retrospectively from medical charts. Perceived health of SCCs was compared to a control group (n = 836) using data from the 2014 Canadian Community Health Survey. Most SCCs (67%) reported excellent or very good health. The mean perceived health of SCCs (2.15 ± 0.91) was not statistically different from population controls (2.10 ± 0.87). Pain (B = 0.35; p < 0.001), physical activity (B = -0.39; p = 0.013) and concerns related to health resources (B = 0.59; p = 0.002) were significant predictors of perceived health. Factors shown to influence SCCs' perceived health may inform interventions. Exploration into how SCCs develop their conception of health may be warranted.


Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Canada/epidemiology , Child , Health Status , Humans , Male , Neoplasms/epidemiology , Retrospective Studies , Survivors , Young Adult
13.
Cancer ; 127(1): 35-44, 2021 01 01.
Article in English | MEDLINE | ID: mdl-33112416

ABSTRACT

Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-of-life/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature.


Subject(s)
Cancer Survivors/statistics & numerical data , Pain/etiology , Female , Humans , Male , Pain/pathology , Risk Assessment
14.
Pediatr Clin North Am ; 67(6): 1083-1101, 2020 12.
Article in English | MEDLINE | ID: mdl-33131536

ABSTRACT

Survivors of childhood cancer are at risk of experiencing fatigue, pain, lower levels of physical activity, increased engagement in risky health behavior, and poor social adjustment, after finishing treatment. Risks are more pronounced for survivors of specific diagnoses or receiving specific treatment protocols. Interventions to address these outcomes are in their infancy. Future research should focus on exploring the antecedents and consequences of these outcomes. In the meantime, researchers and cancer centers should attempt to provide high-quality and accessible health information to survivors through various media outlets to encourage healthy behaviors.


Subject(s)
Cancer Survivors , Quality of Life , Exercise , Fatigue , Health Behavior , Humans , Life Style , Pain Measurement , Risk Factors , Social Adjustment
15.
Children (Basel) ; 7(11)2020 Nov 21.
Article in English | MEDLINE | ID: mdl-33233437

ABSTRACT

BACKGROUND: Among youth with chronic non-cancer pain, 50% have parents with chronic pain. These youth report significantly more pain interference and posttraumatic stress symptoms (PTSS), and worse health-related quality of life (HRQL) than youth whose parents do not have chronic pain. Additionally, parent chronic pain is linked to increased child anxiety and depressive symptoms. Survivors of childhood cancer (SCCs) are at risk of pain and negative psychosocial outcomes and therefore may be especially vulnerable if their parents have chronic pain. Thus, the aims of the current study were to (1) identify rates of chronic pain among parents of SCCs, (2) test group differences in psychological symptoms in parents with chronic pain versus without, and (3) test group differences in pain interference, HRQL, anxiety, depression, and PTSS in SCCs with parents with chronic pain versus without. METHODS: 122 SCCs (Mean age = 15.8, SD = 4.8, 45.7% male, Mean age at diagnosis = 5.9, SD = 4.7) and their parents were recruited from across Canada to complete online questionnaires. Parents were asked if they have had pain for at least three consecutive months and completed the brief symptom inventory (BSI) as a measure of psychological symptomatology. Survivors completed the pain questionnaire, patient reported outcomes measurement information system (PROMIS)-pain interference, anxiety, and depression measures, child posttraumatic stress scale, posttraumatic stress disorder checklist for the Diagnostic and Statistical Manual of Mental Disorders, and the pediatric quality of life inventory. RESULTS: Forty-three (39%) parents of SCCs reported having chronic pain. Of the 29 survivors who had chronic pain, 14 (48%) also had parents with chronic pain. Parents with chronic pain reported significantly higher scores on the BSI than parents without chronic pain, F(1, 116) = 5.07, p = 0.026. SCCs with parents with versus without chronic pain reported significantly higher PTSS F(1, 105) = 10.53, p = 0.002 and depressive symptoms F(1, 102) = 6.68, p = 0.011. No significant differences were found across the other variables tested. CONCLUSIONS: Findings suggest that survivors' parents' own pain is prevalent and is related to survivors' increased depressive symptoms and PTSS, but not anxiety, pain interference, or HRQL. Future research should explore whether parents may benefit from psychological intervention after their child has been diagnosed with cancer and how this could improve outcomes for their child.

17.
Psychooncology ; 29(7): 1132-1140, 2020 07.
Article in English | MEDLINE | ID: mdl-32281171

ABSTRACT

OBJECTIVES: Fear of cancer recurrence (FCR) has not been widely explored in survivors of childhood cancer. Yet, childhood survivors are at risk of experiencing late effects and may be especially vulnerable. The aims of the current study were to conduct a retrospective chart review to determine the prevalence and persistence of FCR among survivors of childhood cancer and to examine factors that may be related to FCR. METHODS: Survivors of childhood cancer (n = 228, mean attained age = 14.5 years [range = 4.7-21 years]; mean diagnosis age = 4.4 years [range = 0-16.5 years]; mean time off treatment = 8.7 years [range = 2.8-19.3 years]) seen in a Long-Term Survivor Clinic (LTSC) completed questionnaires at each clinic visit detailing their current health. FCR was measured with a single item. Data from questionnaires from 2011 to 2018 were analyzed retrospectively. Descriptive statistics and a random effects model were used to address study aims. RESULTS: FCR was reported in 43% (n = 98) of survivors at least once across all clinic visits. Among survivors reporting FCR at least once, 66% were diagnosed with cancer under the age of 5, and 64% were 13 years or older at their most recent follow-up. Twenty-one percent of survivors (n = 48/224) reported FCR during at least 50% of their visits. Survivors with a higher number of depressive symptoms were more likely to report FCR (OR = 1.66, P = .03). CONCLUSIONS: FCR is prevalent among survivors of childhood cancer and is related to other health concerns. Research is needed to understand who is at risk and how to.


Subject(s)
Cancer Survivors/psychology , Fear/psychology , Neoplasm Recurrence, Local/psychology , Neoplasms/psychology , Phobic Disorders/psychology , Adult , Child , Female , Humans , Male , Middle Aged , Neoplasms/pathology , Phobic Disorders/epidemiology , Prevalence , Retrospective Studies , Surveys and Questionnaires
18.
Pain ; 157(10): 2277-2284, 2016 10.
Article in English | MEDLINE | ID: mdl-27276275

ABSTRACT

Chronic pain and posttraumatic stress disorder (PTSD) symptoms have been found to co-occur in adults; however, research has not examined this co-occurrence in adolescence, when pediatric chronic pain often first emerges. The aims of this study were to compare the frequency and intensity of PTSD symptoms and stressful life events in cohorts of youth with (n = 95) and without (n = 100) chronic pain and their parents and to determine the association between PTSD symptoms, health-related quality of life, and pain symptoms within the chronic pain sample. All participants completed questionnaire measures through an online survey. Findings revealed that youth with chronic pain and their parents had significantly higher levels of PTSD symptoms as compared with pain-free peers. More youth with chronic pain (32%) and their parents (20%) reported clinically significant elevations in PTSD symptoms than youth without chronic pain (8%) and their parents (1%). Youth with chronic pain also reported a greater number of stressful life events than those without chronic pain, and this was associated with higher PTSD symptoms. Among the chronic pain cohort, higher levels of PTSD symptoms were predictive of worse health-related quality of life and were associated with higher pain intensity, unpleasantness, and interference. Results suggest that elevated PTSD symptoms are common and linked to reduced functioning among youth with chronic pain. Future research is needed to examine PTSD at the diagnostic level and the underlying mechanisms that may explain why this co-occurrence exists.


Subject(s)
Chronic Pain/complications , Chronic Pain/psychology , Stress Disorders, Post-Traumatic/etiology , Adolescent , Child , Cohort Studies , Female , Humans , Male , Pain Measurement , Parents/psychology , Quality of Life , Surveys and Questionnaires
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