PURPOSE: This study explores the menstrual experiences of people with DSD and sex reassignment in Nigeria.
METHODS: A qualitative approach with a phenomenological study design was employed in this study to explore and describe the experiences of people with DSD at the Usmanu Danfodiyo University Teaching Hospital in Sokoto, Nigeria. The data were collected using face-to-face interviews, transcribed verbatim, and analyzed using NVivo software.
RESULTS: The findings show that the participants experienced menstrual problems: men with menstruation and women with amenorrhea. The female participants generally described amenorrhea as a disappointment and linked menstruation with womanhood. Amenorrhea evinced both emotional and psychological effects. However, some of the female participants considered amenorrhea in a positive light and were happy with their lives without menstruation. The menstrual experiences of male participants included menarche, lower abdominal pain, regular monthly bleeding, and ovulation. The male participants described menstruation as a disaster in their lives and a source of anxiety, suicidal ideation, and depression. Menstruation negatively affected their psychosocial well-being.
CONCLUSIONS: The menstrual experience of individuals with DSD negatively affects their quality of life. The women with DSD in this study showed a generally poor knowledge of menarche, menstruation, and puberty, indicating that their parents had ignored the initial symptoms of DSD. DSD were only recognized at puberty because of the development of ambiguous physical traits and of the onset of menstruation in men and the confirmation of amenorrhea in women.
BACKGROUND: The quality of life of people with disorders of sex development depends largely on the availability of good psychosocial and psychosexual management. There is a lack of qualitative systematic reviews of the literature on the experiences of people with disorders of sex development.
DESIGN: The seven steps of qualitative meta-ethnography were employed in this review.
DATA SOURCES: The following electronic databases were systematically searched until January 2017: Science Direct, Scopus, Sage online, CINAHL, PsycINFO, Medline, Wiley Online Library, and Google Scholar. Search terms for this review were "disorders of sex development," "intersex," "ambiguous genitalia," "experiences," "qualitative study," and "method".
REVIEW METHOD: A 13-item scale was applied to evaluate the quality of the selected studies and synthesized using the principles of meta-ethnography.
FINDINGS: Twelve studies met the eligibility criteria. Six major themes described the experiences of people with disorders of sex development. These included a range of physical, psychological, social, and sexual experiences which affect their quality of life. Different coping strategies were employed by individuals who live with the lifelong condition.
CONCLUSION: Disorders of sex development affect the quality of life of people living with these disorders. Nurses are tasked with providing holistic care for people with disorders of sex development in order to improve their quality of lives. As such, there is a need to explore the experiences of nurses in the management of disorders of sex development.
METHODS: In this cross sectional study, the Malay version of SAQLI was administered to 82 OSA patients seen at the OSA Clinic, Hospital Universiti Sains Malaysia prior to their treatment. Additionally, the patients were asked to complete the Malay version of Medical Outcomes Study Short Form (SF-36). Twenty-three patients completed the Malay version of SAQLI again after 1-2 weeks to assess its reliability.
RESULTS: Initial factor analysis of the 40-item Malay version of SAQLI resulted in four factors with eigenvalues >1. All items had factor loadings >0.5 but one of the factors was unstable with only two items. However, both items were maintained due to their high communalities and the analysis was repeated with a forced three factor solution. Variance accounted by the three factors was 78.17% with 9-18 items per factor. All items had primary loadings over 0.5 although the loadings were inconsistent with the proposed construct. The Cronbach's alpha values were very high for all domains, >0.90. The instrument was able to discriminate between patients with mild or moderate and severe OSA. The Malay version of SAQLI correlated positively with the SF-36. The intraclass correlation coefficients for all domains were >0.90.
CONCLUSIONS: In light of these preliminary observations, we concluded that the Malay version of SAQLI has a high degree of internal consistency and concurrent validity albeit demonstrating a slightly different construct than the original version. The responsiveness of the questionnaire to changes in health-related quality of life following OSA treatment is yet to be determined.
METHODS: This cross-sectional study recruited adult PWH during routine follow-up at five HIV clinical sites in the Asia-Pacific region. Participants were screened for depression using Patient Health Questionnaire-9 and SU using Alcohol, Smoking, and Substance Involvement Screening Test (ASSIST). Quality of life (QoL) was assessed with WHOQOL-HIV BREF and functional ability with World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0). Factors associated with mean QoL and disability scores were analysed using linear regression.
RESULTS: Of 864 PWH enrolled, 753 screened positive for depression or SU. The median (interquartile range, IQR) age was 38 (31-47) years and 97% were on ART. Overall mean WHOQOL-HIV BREF and WHODAS scores indicated greater impairment with increasing depressive symptom severity and SU risk. In multivariate analysis, PWH reporting previous trauma/stress (difference = 2.7, 95% confidence interval [CI] 1.5-3.9, P
METHODS: Electronic medical records (EMR) were reviewed and phone surveys performed with parents of CDH survivors who underwent repair at our institution from 2010 to 2019. They completed the following Pediatric Quality of Life Inventory™ (PedsQL™) questionnaires: Generic Core Scales 4.0 (parent-proxy report) and Family Impact (FI) Module 2.0. Age-matched and gender-matched healthy controls from an existing database were used for comparison. Subgroup analysis of CDH patients alone was also performed. Appropriate statistical analysis was used with p
METHODS: Breast cancer patients were recruited from three Malaysian hospitals between June and November 2017. We compared the proportion of patients who rated PROs as very important (scored 7-9 on a 9-point Likert scale) between Malaysian patients and data collected from patients in HICs via the ICHOM questionnaire development process, using logistic regression. A two-step cluster analysis explored differences in PROs among Malaysian patients.
RESULTS: The most important PROs for both cohorts were survival, overall well-being, and physical functioning. Compared with HIC patients (n = 1177), Malaysian patients (n = 969) were less likely to rate emotional (78% vs 90%), cognitive (76% vs 84%), social (72% vs 81%), and sexual (30% vs 56%) functioning as very important outcomes (P
METHODS: A descriptive and correlational survey was conducted in a private hospital in Kuala Lumpur, Malaysia. A convenience sample of 118 Malaysian breast cancer patients voluntarily participated in the study and responded to a set of questionnaires including: socio-demographic questionnaire, the short form of Locus of Control Scale, the Functional Assessment of Cancer Therapy-Breast (FACT-B), the Hospital Anxiety and Depression Scale (HADS), and the Short-Form Mishel Uncertainty in Illness Scale (SF-MUIS).
RESULTS: The results revealed that breast cancer patients with higher internal locus of control and lower external locus of control experience a higher quality of life, lower anxiety, and lower depression. Also, uncertainty mediated the relationship between locus of control with quality of life and depression (quasi-significant).
CONCLUSIONS: The findings indicated the need for early, targeted psychological interventions seeking to gradually shift cancer patients' locus of control from external to internal in order to improve their quality of life and reduce their depression and anxiety. Moreover, health care providers by providing relevant information to cancer patients, especially for externally oriented patients, can reduce their uncertainty which in turn would improve their quality of life.
METHODS: A prospective double cohort study design was applied at two tertiary referral hospitals over a 6-month period. The study population included all postpartum women who delivered in 2014. Postpartum women with and without SMM were selected as the exposed and non-exposed groups, respectively. For each exposed case identified, a non-exposed case with a similar mode of delivery was selected. The main outcome measures used were scores from the Short Form-12 Health Survey (SF-12).
RESULTS: The study measured 145 exposed and 187 non-exposed women. The group-time interaction of the repeated measure analysis of variance (RM ANOVA) showed no significant difference in the mean overall SF-12 physical component summary score changes (P = 0.534) between women with and without SMM. Similarly, the group-time interaction of the RM ANOVA showed no significant difference in the mean overall SF-12 mental component summary score changes (P = 0.674) between women with and without SMM. However, women with SMM scored significantly lower on a general health perceptions subscale at 1-month (P = 0.031), role limitations due to physical health subscale at 6-month (P = 0.019), vitality subscale at 1-month (P = 0.007) and 6-month (P = 0.008), and role limitations due to emotional problems subscales at 6-month (P = 0.008).
CONCLUSIONS: Women with severe maternal morbidity demonstrated comparable quality of life during the 6-month postpartum period compared to women without severe maternal morbidity.
METHODS: The 70-item QOLQA measuring five QOL domains (physical, psychological, independence, social and environmental) was administered to a random sample of 1363 school-children aged 10-15 years, representative of the ethnic composition of Singapore adolescents (Chinese 72%, Malays 20% and Indians 8%).
RESULTS: Indians reported the highest overall QOL (mean 3.71 +/- SD 0.54) compared to Chinese (3.59 +/- 0.43), p < 0.05, and Malays (3.58 +/- 0.44), p < 0.05. In particular, Indians had significantly higher psychological QOL scores (3.73 +/- 0.61) compared to Chinese (3.55 +/- 0.54), p < 0.01. On the other hand, Chinese scored highest on physical and independence domains (3.97 +/- 0.54), p < 0.01 compared to Malays (3.82 +/- 0.55). There were no statistically significant gender differences in QOL scores. QOL declined significantly from age 10 to 15 for overall score, psychological, physical (p < 0.01) and environmental (p < 0.05). Lower socio-economic status and the self-report of a significant health problem were significantly associated with lower overall QOL and most domains. These ethnic differences persisted after adjusting for differences in socio-economic and health status. Psychometric properties and known group construct validity appeared to be similar across different ethnic groups, but compared to Chinese (r = 0.39) or Malays (r = 0.39), Indians showed a higher correlation of psychological scores with physical score (r = 0.59) and with other domain scores.
CONCLUSION: Significant ethnic differences in reported adolescent quality of life among Chinese, Malays and Indians in Singapore that are independent of socioeconomic and health status suggest important cultural differences.