@phdthesis{Weinert2007,
  author    = {Weinert, Philipp},
  title     = {Lebensqualit{\"a}t bei Patienten mit diabetischen Plantarulcera unter besonderer Ber{\"u}cksichtigung der Nierenfunktion},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-22900},
  school      = {Universit{\"a}t W{\"u}rzburg},
  year      = {2007},
  abstract  = {Ziel dieser Arbeit war es, die Auswirkung einer chronischen Wunde auf die Lebensqualit{\"a}t von Diabetikern zu untersuchen. Dazu sollte die Lebensqualit{\"a}t von Diabetikern ohne chronische Wunde mit der Lebensqualit{\"a}t von Diabetikern mit chronischer Wunde verglichen werden. Analog dazu erfolgte ein Vergleich von Patienten mit und ohne chronischer Wunde, aber zus{\"a}tzlicher dialysepflichtiger Niereninsuffizienz. Befragt wurden insgesammt 215 Patienten. Bei Patienten mit chronischer Wunde erfolgten jeweils drei Befragungen um eventuelle Ver{\"a}nderungen der Lebensqualit{\"a}t im Therapieverlauf zu ermittlen. Die Interviews erfolgten zum Zeitpunkt der Erstbefragung sowie nach einem und drei Monaten. Gemessen wurde die Lebensqualit{\"a}t durch die krankheits{\"u}bergreifenden Messinstrumente "Short-Form-36" (SF-36), dem "Nottingham Health Profile" (NHP)sowie dem neu entwickelten, krankheitsspezifischen "W{\"u}rzburger Wundscore". Es zeigte sich, dass schon das Bestehen eines Diabetes mellitus zu einer erheblichen Verschlechterung der Lebensqualit{\"a}t f{\"u}hrt. Durch eine chronische Wunde kommt es ebenfalls zu einer deutlichen Verschlechterung der Lebensqualit{\"a}t, vor allem sind hier physische Bereiche stark eingeschr{\"a}nkt. Durch eine Dialysepflichtigkeit wird die Lebensqualit{\"a}t zwar auch eingeschr{\"a}nkt, jedoch nicht im selben Umfang wie durch eine chronische Wunde bzw. durch das alleinige Bestehen eines Diabetes mellitus. Bei Patienten mit chronischer Wunde wurde bei Untersuchungen im Therapieverlauf zwischen einem g{\"u}nstigen und einem ung{\"u}nstigen Verlauf unterschieden. Es konnte hier keine signifikanten Ver{\"a}nderungen der Lebensqualit{\"a}t im Verlauf gezeigt werden. Es zeigte sich, dass eine gute Lebensqualit{\"a}t vor allem bei physischen Komponenten negativ mit dem Alter der Befragten korreliert. M{\"a}nnliche Diabetiker mit chronischer Wunde haben in fast allen Bereichen eine bessere Lebensqualit{\"a}t als Frauen. Der "W{\"u}rzburger Wundscore" erwies sich als ein valides Instrument zur Messung der Lebensqualit{\"a}t bei Diabetikern mit chronischer Wunde mit einer h{\"o}heren {\"A}nderungssensitivit{\"a}t bei Ver{\"a}nderungen der Lebensqualit{\"a}t bei g{\"u}nstigem Heilungsverlauf im Vergleich zu den SF-36 und NHP.},
  language  = {de}
}
@phdthesis{Koch2007,
  author    = {Koch, Gunter Fritz},
  title     = {Vergleich von Effekten einer interaktiven Schulung und eines Kurzunterrichts auf das Wissen, die Krankheitsbew{\"a}ltigung und die krankheitsbezogene Lebensqualit{\"a}t bei Patienten mit Magenkarzinom im postoperativen Anschlussheilverfahren - eine kontrollierte, prospektive Studie},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-23288},
  school      = {Universit{\"a}t W{\"u}rzburg},
  year      = {2007},
  abstract  = {Rehabilitation hat zum Ziel, die aus Gesundheitssch{\"a}den resultierenden Symptome und Funktionseinschr{\"a}nkungen sowie eine begleitende ineffektive Krankheitsbew{\"a}ltigung mit nachfolgend eingeschr{\"a}nkter Lebensqualit{\"a}t langfristig zu beseitigen oder zumindest zu verbessern. Eine Reihe von Studien zeigt, dass durch Patientenschulung mit Schwerpunkt Krankheitsinformation und klaren Verhaltenshinweisen hierf{\"u}r ein wichtiger Beitrag geleistet werden kann, beispielsweise bei Diabetes mellitus. Da entsprechende Daten f{\"u}r Patienten mit Tumorerkrankungen selten sind und bei Magenkarzinompatienten fehlen, wurde in vorliegender Studie die Frage untersucht, ob verschiedene Formen von Patientenschulung (interaktiv vs. konventionell) unterschiedliche Kurz- und Langzeiteffekte auf Krankheitswissen, Krankheitsbew{\"a}ltigung-Coping und krankheitsbezogene Lebensqualit{\"a}t haben k{\"o}nnen. 121 Patienten mit kurativ operiertem Magenkarzinom in Anschlussheilbehandlung (AHB) wurden in diese prospektive, kontrollierte Studie aufgenommen und je nach Anreisewoche zwei Gruppen zugeteilt: Gruppe A (N=61, interaktiver Unterricht, 3x60min) und Gruppe B (N=60, Kurzunterricht, 1x60min). Zus{\"a}tzliche Routineprogramme waren f{\"u}r beide Gruppen gleich. Die Datenerhebung erfolgte zu Beginn und am Ende des Klinikaufenthalts (T1, T2) sowie 6 und 12 Monate danach (T3, T4) mittels Frageb{\"o}gen zu Krankheitswissen (KW), Krankheitsbew{\"a}ltigung auf der Dimension aktives, problemorientiertes Coping (Freiburger Fragebogen zur Krankheits-verarbeitung, FKV-AC) sowie gastrointestinaler Lebensqualit{\"a}t (GLQ). Unmittelbar nach der AHB (T2) war beim KW die Anzahl der richtigen Antworten in Gruppe A signifikant h{\"o}her als in Gruppe B, im GLQ-Index (GLQI) zeigte die Gruppe A signifikant h{\"o}here Werte, ebenso beim FKV-AC. In beiden Gruppen gab es Verbesserungen des Wissens und der Lebensqualit{\"a}t. Bei den Nacherhebungen (T3, T4) zeigte sich der signifikante Gruppenunterschied im Krankheitswissen weiterhin, w{\"a}hrend sich beide Studiengruppen im GLQI nicht mehr unterschieden. Im Vergleich zum Kurzunterricht f{\"u}hrt eine interaktive Patientenschulung kurz- und langfristig zu signifikant h{\"o}herem Krankheitswissen sowie kurzzeitig zu verst{\"a}rktem Copingverhalten und einer besseren gastrointestinalen Lebensqualit{\"a}t. Weitere Studien m{\"u}ssen kl{\"a}ren, wie Patientenschulungen diese Parameter gezielter und nachhaltiger beeinflussen k{\"o}nnen.},
  subject      = {Magenkrebs},
  language  = {de}
}
@phdthesis{Schneider2010,
  author    = {Schneider, Christine Miriam},
  title     = {Lebensqualit{\"a}t und Langzeitfolgen mehr als zw{\"o}lf Jahre nach der Diagnose Brustkrebs},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-54134},
  school      = {Universit{\"a}t W{\"u}rzburg},
  year      = {2010},
  abstract  = {Untersuchung von LQ und Korrelaten der LQ bei Brustkrebslangzeit{\"u}berlebenden sowie der physischen wie psychischen Langzeitfolgen einer Brustkrebserkrankung.},
  subject      = {Lebensqualit{\"a}t},
  language  = {de}
}
@article{BurlinaSimsPoliteietal.2011,
  author    = {Burlina, Alessandro P. and Sims, Katherine B. and Politei, Juan M. and Bennett, Gary J. and Baron, Ralf and Sommer, Claudia and Moller, Anette Torvin and Hilz, Max J.},
  title     = {Early diagnosis of peripheral nervous system involvement in Fabry disease and treatment of neuropathic pain: the report of an expert panel},
  series = {BMC Neurology},
  volume    = {11},
  journal   = {BMC Neurology},
  number    = {61},
  doi       = {10.1186/1471-2377-11-61},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-135309},
  pages     = {1-11},
  year      = {2011},
  abstract  = {Background: Fabry disease is an inherited metabolic disorder characterized by progressive lysosomal accumulation of lipids in a variety of cell types, including neural cells. Small, unmyelinated nerve fibers are particularly affected and small fiber peripheral neuropathy often clinically manifests at young age. Peripheral pain can be chronic and/or occur as provoked attacks of excruciating pain. Manifestations of dysfunction of small autonomic fibers may include, among others, impaired sweating, gastrointestinal dysmotility, and abnormal pain perception. Patients with Fabry disease often remain undiagnosed until severe complications involving the kidney, heart, peripheral nerves and/or brain have arisen. Methods: An international expert panel convened with the goal to provide guidance to clinicians who may encounter unrecognized patients with Fabry disease on how to diagnose these patients early using simple diagnostic tests. A further aim was to offer recommendations to control neuropathic pain. Results: We describe the neuropathy in Fabry disease, focusing on peripheral small fiber dysfunction - the hallmark of early neurologic involvement in this disorder. The clinical course of peripheral pain is summarized, and the importance of medical history-taking, including family history, is highlighted. A thorough physical examination (e. g., angiokeratoma, corneal opacities) and simple non-invasive sensory perception tests could provide clues to the diagnosis of Fabry disease. Reported early clinical benefits of enzyme replacement therapy include reduction of neuropathic pain, and adequate management of residual pain to a tolerable and functional level can substantially improve the quality of life for patients. Conclusions: Our recommendations can assist in diagnosing Fabry small fiber neuropathy early, and offer clinicians guidance in controlling peripheral pain. This is particularly important since management of pain in young patients with Fabry disease appears to be inadequate.},
  language  = {en}
}
@phdthesis{Stein2013,
  author    = {Stein, Lisa-Lena},
  title     = {Partizipationsbed{\"u}rfnis und wahrgenommene Partizipation -Zusammenhang mit psychischem Befinden und Lebensqualit{\"a}t},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-83906},
  school      = {Universit{\"a}t W{\"u}rzburg},
  year      = {2013},
  abstract  = {Im Rahmen von Krebserkrankungen m{\"u}ssen zahlreiche medizinische Entscheidungen getroffen werden. Das Bed{\"u}rfnis der Patienten, an solchen Entscheidungen zu partizipieren, ist individuell unterschiedlich und f{\"u}r {\"A}rzte h{\"a}ufig schwer einsch{\"a}tzbar. Ziel dieser Arbeit ist eine bessere Vorhersage der Partizipationsbed{\"u}rfnisse von Krebspatienten und die Untersuchung von Effekten des Partizipationsbed{\"u}rfnisses auf die Lebensqualit{\"a}t.},
  subject      = {Partizipation},
  language  = {de}
}
@article{MeuleFathRealetal.2013,
  author    = {Meule, Adrian and Fath, Katharina and Real, Ruben G. L. and S{\"u}tterlin, Stefan and V{\"o}gele, Claus and K{\"u}bler, Andrea},
  title     = {Quality of life, emotion regulation, and heart rate variability in individuals with intellectual disabilities and concomitant impaired vision},
  series = {Psychology of Well-Being: Theory, Research and Practice},
  journal   = {Psychology of Well-Being: Theory, Research and Practice},
  doi       = {10.1186/2211-1522-3-1},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-96247},
  year      = {2013},
  abstract  = {Background Positive associations have been found between quality of life, emotion regulation strategies, and heart rate variability (HRV) in people without intellectual disabilities. However, emotion regulation and HRV have rarely been investigated in people with intellectual disabilities. Assessment of subjectively reported quality of life and emotion regulation strategies in this population is even more difficult when participants are also visually impaired. Methods Subjective and objective quality of life, emotion regulation strategies, and HRV at rest were measured in a sample of people with intellectual disabilities and concomitant impaired vision (N = 35). Heart rate was recorded during a 10 min resting period. For the assessment of quality of life and emotion regulation, custom made tactile versions of questionnaire-based instruments were used that enabled participants to grasp response categories. Results The combined use of reappraisal and suppression as emotion regulation strategies was associated with higher HRV and quality of life. HRV was associated with objective quality of life only. Emotion regulation strategies partially mediated the relationship between HRV and quality of life. Conclusions Results replicate findings about associations between quality of life, emotion regulation, and HRV and extend them to individuals with intellectual disabilities. Furthermore, this study demonstrated that quality of life and emotion regulation could be assessed in such populations even with concomitant impaired vision with modified tactile versions of established questionnaires. HRV may be used as a physiological index to evaluate physical and affective conditions in this population.},
  language  = {en}
}
@article{WagnerKraemerBlohmetal.2014,
  author    = {Wagner, Martin and Kr{\"a}mer, Johannes and Blohm, Elisabeth and Vergho, Dorothee and Weidemann, Frank and Breunig, Frank and Wanner, Christoph},
  title     = {Kidney function as an underestimated factor for reduced health related quality of life in patients with Fabry disease},
  doi       = {10.1186/1471-2369-15-188},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-111159},
  year      = {2014},
  abstract  = {Background: Impairments of health related quality of life (HRQoL) are frequently observed in Fabry disease (FD) and are known to be related to neuropathic pain and cardiovascular events. This study aimed to explore the role of chronic kidney disease (CKD) in a large cohort of patients with FD. Methods: In 96 patients (53\% female; age 40 ± 12 yrs) with genetically proven FD, HRQoL was assessed by the Medical Outcomes Study (SF-36) questionnaire. All patients were na{\"i}ve to enzyme replacement therapy. Three categories for kidney dysfunction were chosen, eGFR ≥/<60 ml/min/1.73 m2 or need of renal replacement therapy (RRT). Minor (e.g. arrhythmia, angina pectoris, etc.) and major (e.g. myocardial infarction, coronary artery bypass, stroke or implantable cardioverter-defibrillator) vascular events as well as pain and pain therapy were considered in linear regression analyses with the dimensions of HRQoL. Results: Ten patients (10\%) had impaired kidney function and a further nine were on RRT (9.4\%). Kidney function and pain emerged as the main factors associated with lower scores on the SF 36, in particular on physical components (PCS beta-coefficients for CKD -6.2, for RRT -11.8, for pain -9.1, p < 0.05, respectively), while controlling for gender, vascular event and pain-therapy. Relationships were found for mental aspects of HRQoL. Age and history of vascular events were not related to HRQoL. Conclusion: Cardiovascular events and pain are important factors related to HRQoL, social functioning and depression. Our study highlights impaired chronic kidney disease, in particular after initiation of RRT, as a strong determinant of reduced HRQoL in FD.},
  language  = {en}
}
@article{RueeggKriemlerZuercheretal.2017,
  author    = {Rueegg, Corina S. and Kriemler, Susi and Zuercher, Simeon J. and Schindera, Christina and Renner, Andrea and Hebestreit, Helge and Meier, Christian and Eser, Prisca and von der Weid, Nicolas X.},
  title     = {A partially supervised physical activity program for adult and adolescent survivors of childhood cancer (SURfit): study design of a randomized controlled trial [NCT02730767]},
  series = {BMC Cancer},
  volume    = {17},
  journal   = {BMC Cancer},
  doi       = {10.1186/s12885-017-3801-8},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-172497},
  year      = {2017},
  abstract  = {Background: Beyond survival of nowadays >80\%, modern childhood cancer treatment strives to preserve long-term health and quality of life. However, the majority of today's survivors suffer from short- and long-term adverse effects such as cardiovascular and pulmonary diseases, obesity, osteoporosis, fatigue, depression, and reduced physical fitness and quality of life. Regular exercise can play a major role to mitigate or prevent such late-effects. Despite this, there are no data on the effects of regular exercise in childhood cancer survivors from randomized controlled trials (RCTs). \(Primary\) \(outcome\) of the current RCT is therefore the effect of a 12-months exercise program on a composite cardiovascular disease risk score in childhood cancer survivors. \(Secondary\) \(outcomes\) are single cardiovascular disease risk factors, glycaemic control, bone health, body composition, physical fitness, physical activity, quality of life, mental health, fatigue and adverse events (safety). Methods: A total of 150 childhood cancer survivors aged ≥16 years and diagnosed ≥5 years prior to the study are recruited from Swiss paediatric oncology clinics. Following the baseline assessments patients are randomized 1:1 into an intervention and control group. Thereafter, they are seen at month 3, 6 and 12 for follow-up assessments. The intervention group is asked to add ≥2.5 h of intense physical activity/week, including 30 min of strength building and 2 h of aerobic exercises. In addition, they are told to reduce screen time by 25\%. Regular consulting by physiotherapists, individual web-based activity diaries, and pedometer devices are used as motivational tools for the intervention group. The control group is asked to keep their physical activity levels constant. Discussion: The results of this study will show whether a partially supervised exercise intervention can improve cardiovascular disease risk factors, bone health, body composition, physical activity and fitness, fatigue, mental health and quality of life in childhood cancer survivors. If the program will be effective, all relevant information of the SURfit physical activity intervention will be made available to interested clinics that treat and follow-up childhood cancer patients to promote exercise in their patients.},
  language  = {en}
}
@article{EiseleBoczorRakebrandtetal.2017,
  author    = {Eisele, Marion and Boczor, Sigrid and Rakebrandt, Anja and Blozik, Eva and Trader, Jens-Martin and Stork, Stefan and Herrmann-Lingen, Christoph and Scherer, Martin},
  title     = {General practitioners' awareness of depressive symptomatology is not associated with quality of life in heart failure patients - cross-sectional results of the observational RECODE-HF Study},
  series = {BMC Family Practice},
  volume    = {18},
  journal   = {BMC Family Practice},
  doi       = {10.1186/s12875-017-0670-9},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-172445},
  year      = {2017},
  abstract  = {Background Depression is a common comorbidity in patients with chronic heart failure (HF) and linked to a wider range of symptoms which, in turn, are linked to a decreased health-related quality of life (HRQOL). Treatment of depression might improve HRQOL but detecting depression is difficult due to the symptom overlap between HF and depression. Therefore, clinical guidelines recommend to routinely screen for depression in HF patients. No studies have so far investigated the treatment after getting aware of a depressive symptomatology and its correlation with HRQOL in primary care HF patients. Therefore, we examined the factors linked to depression treatment and those linked to HRQOL in HF patients. We hypothesized that GPs' awareness of depressive symptomatology was associated with depression treatment and HRQOL in HF patients. Methods For this observational study, HF patients were recruited in primary care practices and filled out a questionnaire including PHQ-9 and HADS. A total of 574 patients screened positive for depressive symptomatology. Their GPs were interviewed by phone regarding the patients' comorbidities and potential depression treatment. Descriptive and regression analysis were performed. Results GPs reported various types of depression treatments (including dialogue/counselling by the GP him/herself in 31.8\% of the patients). The reported rates differed considerably between GP-reported initiated treatment and patient-reported utilised treatment regarding psychotherapy (16.4\% vs. 9.5\%) and pharmacotherapy (61.2\% vs. 30.3\%). The GPs' awareness of depressive symptomatology was significantly associated with the likelihood of receiving pharmacotherapy (OR 2.8; p < 0.001) but not psychotherapy. The patient's HRQOL was not significantly associated with the GPs' awareness of depression. Conclusion GPs should be aware of the gap between GP-initiated and patient-utilised depression treatments in patients with chronic HF, which might lead to an undersupply of depression treatment. It remains to be investigated why GPs' awareness of depressive symptomatology is not linked to patients' HRQOL. We hypothesize that GPs are aware of cases with reduced HRQOL (which improves under depression treatment) and unaware of cases whose depression do not significantly impair HRQOL, resulting in comparable levels of HRQOL in both groups. This hypothesis needs to be further investigated.},
  language  = {en}
}
@phdthesis{Scheel2020,
  author    = {Scheel, Friederike},
  title     = {Lebensqualit{\"a}t nach Analatresie},
  doi       = {10.25972/OPUS-20704},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-207048},
  school      = {Universit{\"a}t W{\"u}rzburg},
  year      = {2020},
  abstract  = {Children with anal atresia are born with a blind end rectum and without a developed anus. Therefore surgery is the only possible treatment. Postoperative complications may include constipation and/or incontinence, even if surgery went well. This may reduce quality of life. The aim of this paper is to investigate and illustrate post-operative quality of life. Even when good quality of life is indicated, many patients nevertheless suffer from anxiety. We suggest an improved psychological counselling for these patients. This paper not only illustrates options to investigate quality of life but also suggests options to improve quality of life.},
  language  = {de}
}