Factors associated with changes in the quality of life and family functioning scores of primary caregivers of children and young people with primary brain tumors in Karachi, Pakistan: a prospective cohort study.

BACKGROUND: There are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment. METHODS: This prospective cohort study enrolled CYPs aged 5-21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12. RESULTS: Forty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers' mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP's illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers' QoL and family functioning scores were significantly greater. CONCLUSION: We found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.

Resilience and its associated factors in head and neck cancer patients in Pakistan: an analytical cross-sectional study.

INTRODUCTION: The study aimed to assess resilience and its associated factors in head and neck cancer patients, post-treatment in a low middle income country (LMIC) such as Pakistan. METHODS: An analytical cross-sectional study was conducted from November 2019 to May 2020 among head and neck cancer patients aged at least 18 years at the largest private tertiary care hospital, in Karachi, Pakistan. Information regarding their resilience scores was collected through Wagnild and Young's Resilience scale that comprises of 14 items (RS-14). Moreover, depression and anxiety were also assessed via Hospital Anxiety and Depression Scale (HADS) and social support was assessed by Enriched Social Support Instrument (ESSI). RESULTS: The data was analyzed by linear regression modeling. Unadjusted and adjusted beta coefficients with 95% CI were reported. A total of 250 head and neck cancer patients were recruited, 79% of them were males. Mean age of the patients was 51.59 years with 93% having high social support and only 8% having severe depression and 3% having severe anxiety. After adjusting for the covariates in multivariable analysis resilience was associated with severe depression (- 17[- 20.98,-12.93]) or borderline depression (- 4[- 8.41,-0.39]), severe anxiety (- 11 [- 17.88,-4.18]), low social support (- 6[- 9.62,-1.71]), having family members of > 6 in the household (- 2[- 4.31,-0.29), smokeless tobacco users post- treatment (10[5.79, 14.45]), and those who underwent tracheotomy (- 4[- 7.67,-0.21]). There was a significant interaction between education and role in the family (decision maker). CONCLUSION: In Pakistan, a South Asian LMIC, collectivist culture prevails, family ties are greatly promoted thus resilience and social support is highly prevalent in head and neck cancer patients resulting in lower prevalence of depression and anxiety. Our study highlights that higher resilience is prevalent among small families less than six members, as the welfare of the individual is prioritized over multiple needs of the family. Formal Education and role in household/decision making power are effect modifiers in our study, demonstrating its protective effect on the mental health of head and neck cancer patients. High resilience scores were reported among current smokeless tobacco users as compared to quitters post treatment. Resilience-building interventions should be formulated to aid head and neck cancer patients to cope with the disease and its sequel.

Clinical and psychosocial factors associated with quality of life in patients with head and neck cancer: an analytical cross-sectional study from a lower-middle-income country.

INTRODUCTION: The disease course of head and neck (H&N) cancer can severely impair patients' quality of life (QoL). In Pakistan, a South Asian lower-middle-income country (LMIC), psychosocial factors may impact QoL. We aimed to assess QoL and associated factors amongst patients with H&N cancer in Pakistan. METHODS: An analytical cross-sectional study was conducted amongst adult (≥ 18 years) patients with H&N cancer who were ≥ 4 weeks post-initiation of treatment. The survey assessed QoL (European Organization for Research and Treatment of Cancer Quality of Life Questionnaires), anxiety and depression (Hospital Anxiety and Depression Scale), and social support (Enriched Social Support Instrument). Multivariable linear regression was performed for analysis. RESULTS: A total of 250 patients (mean age: 51.6 years) were included. The majority of patients were married (87%) and living with multigenerational/extended family households (53%). On multivariable linear regression, ongoing cancer treatment (beta coefficient: -13.93), having a tracheostomy (-10.02), and receiving adjuvant chemoradiotherapy (-8.17) were significantly associated with poorer global QoL. Additionally, poorer QoL was associated with depression (-24.37) and anxiety (-13.34). However, having more household family members was associated with better global QoL (0.34). CONCLUSION: The QoL of patients with H&N cancer in Pakistan is affected by both the nature of cancer treatment as well as sociocultural factors such the number of household family members. Given that poorer QoL is associated with worse mental health outcomes, there is a need to develop and implement psychosocial interventions to improve the QoL of patients with H&N cancer in Pakistan, particularly during active treatment.

Factors affecting well-being in brain tumor patients: An LMIC perspective.

Introduction: Brain tumor is a devastating and often fatal diagnosis; quality of life and patient well-being are important goals of treatment. This study addresses the gap in culture-specific literature exploring the needs and coping strategies of brain tumor patients within an LMIC setting. Methodology: A qualitative approach was undertaken using an exploratory descriptive study design. In-depth interviews were conducted to capture the perspective of 250 brain tumor patients at a private tertiary center followed by extensive content analysis to identify major themes and sub-themes across responses. Results: The analysis identified three major themes: (i) Factors affecting the lives of brain tumor survivors (BTSs) and their impact (ii) What works to improve QoL according to the survivors' perspectives, and (iii) Coping tactics & fostering healthy relationships. The need for financial navigation strategies improved patient-physician relationships, and reinforcing positive coping strategies were emphasized. Conclusion: In our population, family support and spiritual connection played an important role in helping patients mitigate the psychosocial burden of illness. However, financial concerns were pervasive and need to be addressed for better overall well-being.

Psychosocial factors influencing quality of life in patients with primary brain tumors in Pakistan: an analytical cross-sectional study.

OBJECTIVE: Despite quality of life (QoL) being recognized as an important outcome in neuro-oncology, there is a lack of research from Pakistan where sociocultural differences may influence QoL. This study aimed to measure the QoL in patients with primary brain tumors (PBTs) and assess its association with mental health outcomes and social support. RESULTS: Our study included a total of 250 patients, with a median age of 42 years (range 33-54 years). The commonest brain tumors were glioma (46.8%) and meningioma (21.2). The mean global QoL of the sample was 75.73 ± 14.9. The majority of patients had high social support (97.6%) and were not depressed (90%) or anxious (91.6%). On multivariable linear regression, global QoL was inversely associated with no or low income (beta coefficients: -8.75 to -11.84), having hypertension (-5.53), currently using a urine catheter (-13.55), having low social support (-28.16) suffering from mild (-15.31) or symptomatic (-23.84) depression, or mild anxiety (-13.22).

Psychometric properties of the Urdu version of the EORTC QLQ-H&N35 (European organization for research and treatment of cancer head and neck module) quality of life tool.

BACKGROUND: We translated and validated the Urdu version of the European Organization for Research and Treatment of Cancer Quality of Life (QoL) Questionnaire's Head and Neck (H&N) Cancer Module (EORTC QLQ-H&N35) and assessed its convergent and discriminant validity by examining correlations of QoL with depression, anxiety, and resilience. METHODS: We translated the EORTC QLQ-H&N35 according to EORTC instructions. Patients at a tertiary care hospital in Pakistan completed a survey consisting of Urdu versions of EORTC QLQ-C30 (core QoL tool), QLQ-H&N35, Hospital Anxiety and Depression Scale, and Wagnild and Young Resilience Scale (RS-14). Content validity, convergent validity, discriminant validity, and reliability (using Cronbach's alpha) of the EORTC QLQ-H&N35 were assessed. RESULTS: Our sample comprised 250 patients with H&N cancer, most commonly oral (82%). The Urdu translations were comprehensible for all patients. The Cronbach alpha for QLQ-H&N35 multi-item domains ranged from 0.75 to 0.98 (acceptable to excellent), barring "Senses Problems", which was less than the generally acceptable level (0.50). The patient-reported content validity index (CVI) scores for relevance and clarity of the Urdu version of the QLQ-H&N35 were 0.93 and 0.92, respectively (both excellent). Our results revealed weak bidirectional correlations of the QLQ-H&N35 with resilience, depression, and anxiety, showing good discriminant validity. A weak-to-moderate but significant negative correlation (r: - 0.185 to - 0.613; p < 0.01) was seen between the QLQ-H&N35 and the global QoL measure of the QLQ-30. CONCLUSION: Our Urdu translation of the EORTC QLQ-H&N35 demonstrated validity comparable to previous studies, with good discriminant construct validity when measured against resilience, depression, and anxiety. An issue of concern is the poor internal consistency of the "Senses Problems" domain. Nevertheless, the Urdu translation produced in this study serves as a valid and reliable measure to measure QoL in H&N cancer in clinical or research settings in Pakistan.