Objective The goal of this study is to report on the linguistic validation and reliability of the Hong Kong Chinese version of the Pediatric Quality of Life Inventory™ (PedsQL™) End-stage Renal Disease Module for Children with end-stage renal disease (ESRD) in Hong Kong, and its use to assess health-related quality of life (HRQOL) in end-stage renal disease children receiving different treatment modalities: peritoneal dialysis, haemodialysis and renal transplantation. Methods In part 1, forward and backward translations following a stringent validation protocol produced the Chinese translation version. Content validity of the translated instrument was assessed. In part 2, internal consistency and reliability of the questionnaire was evaluated by 38 pairs of parents and children with end-stage renal disease aged 5 to 18. The data was further analysed according to different treatment modalities. Results The translated Hong Kong Chinese version of the Pediatric Quality of Life Inventory ™ (PedsQL™) End-stage Renal Disease Module (PedsQL™ 3.0 ESRD Module-HKC) was found to have good content validity and was acceptable to most patients and parents. Internal consistency was excellent (Cronbach’s α = 0.91 in Patient version and = 0.94 in Parent version). Test-retest reliability, determined with the intraclass correlation coefficients, was excellent (0.89 in Patient version and 0.93 in Parent version). It was found that there was significant better HRQOL in patient received renal transplantation compared with Dialysis (peritoneal dialysis or haemodialysis, p=0.006.) Conclusions This study suggested good content validity, internal consistency, and reliability of the Chinese version of the Pediatric Quality of Life Inventory ™ (PedsQL™) End-stage Renal Disease Module (PedsQL™ 3.0 ESRD Module-HKC). It opened a new dimension of health care assessment for end-stage renal disease children in Hong Kong. Transplantation was reported to have a significant better quality of life score. Further studies with larger samples should be performed to confirm the psychometric properties of this translated instrument. / published_or_final_version / Public Health / Master / Master of Public Health

published_or_final_version / Mental Health / Master / Master of Social Sciences

Submitted in partial fulfillment of the requirements for the degree of Master of Health Sciences in Clinical Technology, Durban University of Technology, Durban, South Africa, 2017. / Introduction The prevalence of infertility is increasing at an alarming rate globally. Many couples are afflicted with infertility due to an array of diseases, trauma and psychological stresses. Renal disease is one such pathophysiological condition which is increasing amongst the younger age group. Often the progression of chronic renal disease leads to end stage renal failure that requires a renal transplantation. Post renal transplant, immunosuppressive agents are routinely prescribed to prevent allograft rejection. Immunosuppressive agents are potent drugs that can have deleterious side effects on semen parameters. However, the effects of the immunosuppressive agents on semen parameters in the literature are unclear and require further investigation. It is, therefore, important to assess the effects of immunosuppressive agents on semen, especially the three vital aspects of sperm concentration, motility and morphology which form the basis of male reproduction. Aims and Objectives of study This was a prospective observational study evaluating the effects of different immunosuppressive regimens on sperm parameters in post renal transplant male patients. The main aspects of semen parameters such as sperm concentration, motility and morphology that determine reproductive potential were assessed in the study patients and compared to the gold standard of semen analysis according to the World Health Organisation (WHO) reference values. Methodology Thirty-four renal transplant patients were recruited from the databases of both private nephrologists in the greater Durban area and the academic renal unit at Inkosi Albert Luthuli Central Hospital. Following bioethical approval and informed consent, patients were required to produce a semen sample by masturbation. A questionnaire documenting the patient’s lifestyle, aetiology of renal disease, transplant date and immunosuppressive duration and regimen were recorded. The semen samples were analysed comprehensively according to the protocol on semen analysis recommended by the WHO. This included the macroscopic investigation (volume, appearance, colour, viscosity, liquefaction time and pH) and microscopic evaluation (sperm concentration, total motility, morphology, IgG/IgA and vitality). Sperm concentration, total motility, morphology and vitality were examined and recorded in duplicate to strengthen the validity of the results. A biostatistician analysed the data and determined the statistical analysis. Descriptive statistics determined values of semen parameters in renal transplanted males and in each race demographic. The one sample t-test analysed the statistical significance between the mean study values and the WHO reference values. The effect of the immunosuppressive agent on semen parameters was determined using multiple linear regressions whilst ROC analysis determined the sensitivity and specificity of sperm concentration, total motility and morphology in predicting pregnancy from the patients that fathered children post renal transplant. Results The mean sperm concentration and morphology in the study patients were 14.0 mill/ml (95% Confidence Interval (CI) 10.2 – 17.7) and 3.3% (95% CI 2.7 – 3.9), respectively. Although values obtained were minimally lower than the WHO reference values, these results were within the 95% CI of the WHO guidelines. Motility evaluation revealed higher values of 43.2% (95% CI 36.6 – 49.7). In contrast, sperm vitality was considerably decreased, 47.5% (95% CI 40.6 – 54.4). All semen parameters exhibited no statistical significance (one sample t-test) when analysed against the WHO reference values except for sperm morphology, (p = 0.025; p< 0.05) which showed decreased morphology irrespective of immunosuppressive regimen. Semen volume 1.7 ml (95% CI 1.3 – 2.0) and pH 7.7 (95% CI 7.6 – 7.9) were both within the WHO guidelines. Descriptive statistics according to racial demographics showed no differences in semen values. An almost perfect linear relationship existed between total sperm motility and vitality (r = 0.967). Multiple linear regressions of duration and dosages of immunosuppressive drugs tacrolimus and mycophenolate mofetil, could not predict the effect of the immunosuppressive agents on sperm concentration, total motility and morphology. There was a significant difference in morphology between those with and without children post renal transplant. Those with children post renal transplant exhibited a higher morphology value, (p = 0.001; p< 0.05). Sensitivity and specificity analysis of the patients with children post renal transplant concluded that morphology is the most optimal indicator and predictor of pregnancy (AUC = 0.854). Tacrolimus was the common immunosuppressive agent used in the four patients that fathered children. This was more evident in patients that underwent therapy with Sirolimus followed by Cyclosporin A (CsA) and changed to Tacrolimus as the last immunosuppressive agent used for maintenance therapy. Conclusion The ability to procreate in renal transplanted males has become increasingly difficult and emotionally challenging. In this study sperm concentration and morphology of renal transplanted males exhibited parameters similar to the general fertile population. Total motility possessed a higher range of values in contrast to sperm vitality which showed a significant decrease from the WHO reference values. The effect of immunosuppressive treatment on semen parameters could not be clearly defined due to the number of immunosuppressive regimens that patients were subjected to intermittently resulting in small sample sizes within each immunosuppressive regimen grouping. The majority of patients underwent a triple maintenance therapy of tacrolimus, MMF and prednisone. The dosage and duration of these tacrolimus and MMF was inconclusive in determining a beneficial or detrimental relationship on semen parameters. Morphology was shown to be the most significant indicator in predicting pregnancy in patients that fathered children. Tacrolimus was a common immunosuppressive agent used in the majority of patients that fathered children. It may have protective effects on sperm parameters as shown in patients that fathered children. This was a study with a small sample size and further investigations are required in a larger cohort of patients to assess individualized effects of the different immunosuppressive agents on sperm parameters. / M

末期腎衰竭乃是一種慢性並且會持續惡化的疾病，現時唯一的治療方案便是腎功能替代療法。在香港，一般新發現患有末期腎衰竭的病人，將會被安排進行持續性家居腹膜透析。接受持續性家居腹膜透析的病人均需遵照以下四項治療性方案(包括限制膳食和流質食物，服用處方葯物，及跟從腹膜透析的指引)，以減慢病程的惡化。以往有關病人遵照治療性方案的研究，大多側重於使用血液透析的病人及醫護專業人仕的評估。本研究的目的乃是從現正進行持續性家居腹膜透析的病人的觀點，去明白及解釋病人遵照治療性方案的模式。 / 此硏究採用混合方法硏究設計，並分兩期進行。在第一期的調查，173位病人自我評估其遵照治療性方案中四個環節的程度。調查結果顯示:參加對葯物及腹膜透析的遵照程度，比限制膳食和流質食物的遵照程度為高。再者，男性、較年青、或進行了透析治療一至三年的參加者，自覺其遵照程度比其他參加者為低。此調查結果將指導第二期硏究的最大變化採樣，方法是跟據參加者自我報告其遵照治療性方案的程度分為跟從及不跟從兩組，硏究採用立意取樣方法去選取36位不同性別、年齡、及透析年歷的參加者作第二期硏究的面談。整合第一期的調查及第二期的面談結果後，硏究為參加者遵照治療性方案的模式提供了解釋。 / 結果顯示參加者的遵照模式乃是一個浮動過程，此過程可分為三個階段: 起初的遵照模式、隨後的遵照模式、及長期的遵照模式。在起初的遵照模式階段，參加者嘗試嚴謹地遵照各項治療性方案，但體會到這是不能持久的。在進行了透析二至六個月後，參加進入隨後的遵照模式，透過試驗、監察及不斷的調校，參加者學會選擇性地去遵照某些治療性方案。當參加者接受透析三至五年後，他們開始進入長期的遵照模式，在這階段，參加者已能將自行修改了的治療性方案融入日常的生活當中。 / 參加者遵照治療性方案的浮動過程，乃是受其「抱怨失去自主及常規」和「嘗試挽回自主及常規」所驅使。此浮動情況在每個階段都會發生。除了透析年歷，影響參加者遵照治療性方案的決定性因素乃是其家人及醫護專業人仕的支持。參加並認為醫護專業人仕非常強調其需絶對遵照所有治療性方案，反眏現行以治療為本的照料模式。 / 此硏究在理論及臨床上皆有貢獻。在理論方面，此乃首個硏究確立接受持續性家居腹膜透析的病人，在遵照治療性方案的浮動過程中出現的三個階段。在臨床上，此三個階段的確立可作為策劃護理方案的參照，以幫助病人順利過渡各個階段。硏究的結果亦倡導醫療模式的轉變，即由以治療作主導的模式轉變為以病人為本的照料模式，授權病人在末期腎衰竭的治療過程中參與自我料理。 / End-stage renal disease (ESRD) is a chronic, progressive and debilitating illness with renal replacement therapy (RRT) as the only treatment modality. In Hong Kong, patients newly diagnosed with ESRD who require RRT are generally started on continuous ambulatory peritoneal dialysis (CAPD). Patients receiving CAPD are required to adhere to a renal therapeutic regimen comprising four components (dietary and fluid restrictions, and medication and dialysis prescriptions) to decelerate disease progression. Studies on patients' adherence have mainly focused on those undergoing haemodialysis and are generally from healthcare professionals' perspectives. The aim of this study was to understand and explain adherence from the perspectives of patients undergoing CAPD. / The study employed a mixed-methods design and was conducted in two phases. In phase I, a survey was conducted to examine 173 patients' self-reported adherence to the four components of the therapeutic regimen. Results showed that participants were more adherent to dialysis and medication prescriptions than to fluid and dietary restrictions. Moreover, participants who were male, younger or had received dialysis for 1 to 3 years rated themselves as more non-adherent than other participants. These findings guided the maximum variation sampling of 36 purposively recruited participants of different genders, ages, and duration of dialysis from the adherent and non-adherent groups for the phase II interview. The survey and interview data were merged in the interpretation of findings to provide an understanding of participants' adherence. / Findings indicate that participants' adherence was a dynamic process with three stages: initial adherence, subsequent adherence and long-term adherence. At the stage of initial adherence, participants attempted to follow instructions but found that strict persistent adherence was impossible. After the first 2 to 6 months of dialysis, participants entered the stage of subsequent adherence. Through experimenting, monitoring and making continuous adjustments, they learned to adopt selective adherence. The stage of long-term adherence commenced after participants had received dialysis for more than 3 to 5 years. At this stage, they were able to assimilate the modified therapeutic regimen into everyday life. / The dynamic process of adherence was driven by "grieving for the loss of autonomy and normality" and "attempting to regain autonomy and normality". The process was dynamic as there were fluctuations at each stage of the participants' adherence. In addition to the duration of dialysis, the major determinant influencing the participants' adherence was the support provided by family members and healthcare professionals. Moreover, participants perceived that the focus of care provision was on strict adherence to all components of the therapeutic regimen, reflecting a biomedical model of care. / This study has theoretical and clinical significance. Theoretically, this is the first study that identified three stages in the dynamic process of adherence among patients undergoing CAPD. Clinically, with reference to each stage identified, nursing interventions can be developed to help patients achieve a smooth transition throughout all the stages. The findings also call for a paradigm shift from the biomedical model of care to patient-centred care, so as to empower patients to engage in self-management of their ESRD. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Lam, Lai Wah. / Thesis (Ph.D.)--Chinese University of Hong Kong, 2012. / Includes bibliographical references. / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract also in Chinese; some appendixes also in Chinese. / LIST OF TABLES --- p.xv / LIST OF FIGURES --- p.xvi / LIST OF ABBREVIATIONS --- p.xvii / LIST OF APPENDICES --- p.xviii / Chapter CHAPTER ONE --- INTRODUCTION / Introduction --- p.1 / ESRD and its management in the Hong Kong context --- p.2 / The research problem --- p.3 / Aim of the study --- p.6 / Overview of the thesis --- p.6 / Chapter CHAPTER TWO --- LITERATURE REVIEW / Introduction --- p.7 / Literature search strategies --- p.7 / The concept of adherence --- p.8 / Theoretical models used to understand adherence --- p.14 / Health belief model --- p.14 / Locus of control --- p.16 / Self-efficacy --- p.19 / Transtheoretical model --- p.22 / Measurement of adherence --- p.24 / Prevalence of adherence --- p.27 / Patients undergoing HD --- p.28 / Patients undergoing PD --- p.31 / Factors influencing patients’ adherence --- p.34 / Demographic and clinical characteristics --- p.34 / Social support --- p.37 / Knowledge about adherence --- p.39 / Chinese culture --- p.43 / Exploring adherence from patients’ perspectives --- p.47 / Adherence among patients undergoing dialysis in Hong Kong --- p.51 / An introduction to the concept of self-management --- p.52 / Summary --- p.53 / Chapter CHAPTER THREE --- METHODOLOGY / Introduction --- p.56 / Aim --- p.56 / Objectives --- p.56 / Operational definitions --- p.57 / Research design --- p.57 / The paradigm of mixed methods research --- p.58 / Justification for using a mixed methods design --- p.60 / Application of the mixed methods design --- p.61 / Phase I study --- p.67 / Sampling --- p.67 / Setting --- p.67 / Sampling method and sample size --- p.67 / Data collection method --- p.68 / Instrument --- p.68 / Data collection procedures --- p.70 / Data analysis --- p.70 / Pilot Study --- p.71 / Validity and reliability --- p.72 / Phase II study --- p.74 / Sampling --- p.74 / Sample size --- p.74 / Sampling method --- p.75 / Data collection method --- p.80 / Semi-structured interview --- p.80 / Development of the interview guide --- p.81 / Data collection procedures --- p.82 / Making contact with participants --- p.82 / The interviewing process --- p.83 / Data analysis --- p.87 / Pilot study --- p.89 / Rigour of the study --- p.91 / Credibility --- p.91 / Dependability --- p.95 / Confirmability --- p.95 / Transferability --- p.95 / Ethical considerations --- p.96 / Summary --- p.98 / Chapter CHAPTER FOUR --- FINDINGS OF THE PHASE I STUDY / Introduction --- p.99 / Results --- p.99 / Participants --- p.99 / Demographic and clinical characteristics of the participants --- p.100 / Overall adherence to the therapeutic regimen --- p.103 / Number of days non-adherent to the therapeutic regimen --- p.103 / Degree of deviation from the therapeutic regimen --- p.104 / Adherence in relation to demographic and clinical variables --- p.106 / Summary --- p.109 / Chapter CHAPTER FIVE --- FINDINGS OF THE PHASE II STUDY / Introduction --- p.110 / Demographic and clinical characteristics of the participants --- p.110 / Major categories and subcategories identified --- p.115 / Perceptions of adherence --- p.117 / Meaning of adherence --- p.117 / Perceived needs to adhere --- p.118 / Perceived levels of adherence --- p.120 / The process of adherence --- p.123 / Initial adherence --- p.124 / Practising two major types of adherence --- p.124 / Striving to live with strict adherence --- p.124 / Doing what I am told --- p.124 / Trying my best --- p.125 / Exercising self-control --- p.127 / Adopting partial adherence --- p.128 / Recognizing limitations of current types of adherence --- p.129 / Sacrificing freedom for strict adherence --- p.129 / Social restriction --- p.129 / Having nothing to eat --- p.132 / Paying the price of inadequate adherence --- p.133 / Physiological complications --- p.134 / Need for additional treatment --- p.136 / Harsh comments from healthcare professionals --- p.137 / Realizing the need for changes in adherence --- p.139 / Rationalising an easy-going approach to adherence --- p.139 / Seeing the need for stricter adherence --- p.144 / Subsequent adherence --- p.146 / Experimenting with an easy-going approach to adherence --- p.147 / Allowing some slippage --- p.147 / Monitoring indicators of adherence --- p.148 / Making continuous adjustments --- p.149 / Adopting selective adherence --- p.153 / Long-term adherence --- p.158 / Factors influencing the process of living with adherence --- p.159 / Support --- p.159 / Family members --- p.159 / Healthcare professionals --- p.163 / Hope for the future --- p.165 / Situational factors --- p.168 / Dinning out --- p.169 / Employment --- p.171 / Summary --- p.173 / Chapter CHAPTER SIX --- DISCUSSION / Introduction --- p.177 / The dynamic process of adherence --- p.179 / Initial adherence --- p.182 / Following instructions --- p.182 / Grieving for the loss of autonomy and normality --- p.184 / Social restriction --- p.185 / Unmet nutritional and psychosocial needs --- p.187 / Subsequent adherence --- p.193 / Experimenting with an easy-going approach to adherence --- p.193 / Attempting to regain autonomy and normality --- p.198 / Dialysis --- p.199 / Medication --- p.201 / Fluid --- p.204 / Diet --- p.205 / Long-term adherence --- p.209 / Support as a major determinant of adherence --- p.212 / Family --- p.213 / Healthcare professionals --- p.216 / Biomedical model of care --- p.221 / Disease-oriented perspective --- p.222 / One-way paternalistic communication --- p.228 / Summary --- p.232 / Chapter CHAPTER SEVEN --- CONCLUSIONS / Introduction --- p.235 / Limitations of the study --- p.235 / Implications --- p.237 / Implications for clinical practice --- p.237 / Initial stage --- p.237 / Provision of timely appropriate support --- p.238 / Psychological support --- p.238 / On-site support --- p.239 / Adjustment of the CAPD training content --- p.240 / Empowering patients for self-management of their ESRD --- p.241 / Subsequent stage --- p.244 / Long-term stage --- p.245 / Implications for administration --- p.246 / Implications for nursing education --- p.247 / Recommendations for further research --- p.249 / Conclusions --- p.252 / REFERENCES --- p.254

Luk, Pik Shan Yvonne. / Thesis (M.Phil.)--Chinese University of Hong Kong, 2007. / Includes bibliographical references (leaves 134-146). / Abstracts in English and Chinese ; some text in appendix also in Chinese. / Abstract (English version) --- p.ii-iii / Abstract (Chinese version) --- p.iv / Acknowledgement --- p.v / List of Table --- p.vi / Appendices --- p.vii / Chapter 1 --- Introduction --- p.1-5 / Chapter 2 --- Literature Review / Introduction --- p.6-7 / Psychological Distress --- p.7-13 / Health-related Quality of Life --- p.13-25 / Marital Relationship --- p.26-31 / Summary --- p.31-34 / Chapter 3 --- Aims & Methodology / Aims & Objectives --- p.35-37 / Operational Definition --- p.37-38 / Research Design --- p.38-39 / Setting & Sample --- p.39-40 / Instrument / Psychological Distress --- p.41-43 / Health-related Quality of Life --- p.43.44 / Marital Relationship --- p.44-46 / Demographic Data --- p.47 / Data Collection Procedure --- p.4748 / Ethical Consideration --- p.48-50 / Data Analysis --- p.50-51 / Pilot Study --- p.51-52 / Chapter 4 --- Findings / Introduction --- p.53-54 / Sociodemographic Characteristics --- p.54-56 / Psychological Distress --- p.57-58 / Health-related Quality of Life --- p.59-61 / Marital Relationship --- p.62-65 / Normality of the Outcome Variables --- p.65-66 / Relationships between the Study Outcomes and Sociodemographic Data --- p.66-68 / "Relationships between Anxiety, Depression, Health-Related Quality of Life and Marital Relationship" --- p.68-76 / Summary --- p.16-78 / Chapter 5 --- Discussion / Introduction --- p.79 / Socio-demographic and Clinical Characteristics of CAPD patients --- p.79-84 / Psychological Distress of CAPD Patients --- p.84-85 / Components of Psychological Distress: Anxiety --- p.85-86 / Components of Psychological Distress: Depression --- p.86-88 / Gender differences of the Levels of Anxiety and Depression among CAPD Patients --- p.88-89 / Cultural Difference of Anxiety and Depression among CAPD Patients --- p.89-90 / Health-related Quality of Life among CAPD Patients / Health-related Quality of Life of CAPD Patients Affected by Renal Symptoms --- p.90-91 / Health-related Quality of Life of CAPD Patients Affected by the effects of Kidney Disease --- p.91-93 / Health-related Quality of Life of CAPD Patients Affected by the burden of / Having Kidney Disease --- p.93-94 / Health-related Quality of Life of CAPD Patients Affected by the General Physical Health --- p.94-96 / Health-related Quality of Life of CAPD Patients Affected by the General Mental Health --- p.96-97 / Gender differences of the Levels of Health-related Quality of Life among CAPD Patients --- p.97-98 / Cultural Difference of Health-related Quality of Life among CAPD Patients --- p.98-99 / Sexual Issues and Marital Relationship of CAPD Patients / Sexual Issues of CA PD Patients --- p.100-102 / CAPD Patients' Perception of the Marital Relationship --- p.102-104 / Gender Differences in Perception of the Marital Relationship among CAPD Patients --- p.104 / Cultural Difference in Perception of the Marital Relationship among CAPD Patients --- p.105-106 / "Relationships between Participants' Characteristics and Psychological Distress," / HRQoL and Marital Relationship / "Relationships of Income with Anxiety, Depression and General Mental Health" --- p.107-108 / Relationship between Duration of Receiving Dialysis and Health-related Quality of Life --- p.108-109 / Relationship between Occupational Status and General Mental Health --- p.199.110 / "Relationships among Anxiety, Depression, HRQoL and Marital Relationship" / The Relationship between Anxiety and Depression --- p.110-111 / "The Relationship between Anxiety, Depression and HRQoL" --- p.112 / "The Relationship between Anxiety, Depression and Marital Relationship" --- p.112-113 / The Relationships among Domains of Health-related Quality of Life --- p.113-114 / The Relationship between Health-related Quality of Life and Marital Relationship --- p.114-115 / Predictors of Health-related Quality of Life among CAPD Patients / Anxiety and Depression as Predictors of Health-related Quality of Life --- p.116-118 / Marital Relationship as Predictors of Health-related Quality of Life --- p.118-119 / Summary --- p.119-121 / Chapter 6 --- Conclusion / Limitations / Validity of Participants' Responses --- p.122-123 / Generalization of the Study's Findings --- p.123-124 / Psychometric Property of the Chinese Version of KDQOL-36 --- p.124-125 / The Sexual Items ofKDQOL-SF --- p.125 / Appropriateness of Using HADS and Multiple Correlations --- p.126 / Implications of the Study Findings / Implications for nursing knowledge --- p.126-128 / Implications on the Nursing Practice --- p.128-130 / Recommendations for Further Research --- p.130-132 / Conclusion --- p.132-133 / Chapter 7 --- Reference --- p.134-146 / Chapter 8 --- Appendix --- p.147-179