Life Issues In Patients Research Articles

Quality of life issues in patients with ductal carcinoma in situ: a systematic review.

Ductal carcinoma in situ (DCIS) of the breast is one of the most common pre-invasive cancers diagnosed in women. Quality of life (QoL) is extremely important to assess in studies including these patients due to the favorable prognosis of the disease. The primary objective of this systematic review was to compile a comprehensive list of QoL issues, all existing QoL assessment tools, and patient-reported outcome measures used to assess DCIS. A search was conducted on Ovid MEDLINE, EMBASE, and Cochrane Central Register of Controlled Trials databases from inception to August 2023, using keywords such as "ductal carcinoma in-situ", "quality of life", and "patient-reported outcomes." QoL issues and QoL tools in primary research studies were extracted. A total of 67 articles identified issues pertaining to patients with DCIS spanning physical, functional, and psychosocial QoL domains. Physical and functional issues observed in patients included pain, fatigue, and impaired sexual functioning. Psychosocial issues such as anxiety, depression, and confusion about one's disease were also common. QoL tools included those that assessed general QoL, breast cancer-specific tools, and issue-specific questionnaires. The current instruments available to assess QoL in patients with DCIS do not comprehensively capture the issues that are pertinent to patients. Thus, the modification of existing tools or the creation of a DCIS-specific QoL tool is recommended to ensure that future research will be sensitive towards challenges faced by patients with DCIS.

Understanding quality of life issues in patients with advanced melanoma: Phase 1 and 2 in the development of the EORTC advanced melanoma module

AimsWe aimed to develop a European Organization for Research and Treatment of Cancer (EORTC) Quality of Life (QoL) module tailored for patients with advanced (resectable or unresectable stage III/IV) melanoma receiving immune checkpoint inhibitors or targeted therapy. MethodsFollowing the EORTC QoL Group module development guidelines, we conducted phases 1 and 2 of the development process. In phase 1, we generated a list of health-related (HR)QoL issues through a systematic literature review and semi-structured interviews with healthcare professionals (HCPs) and patients with advanced melanoma. In phase 2, these issues were converted into questionnaire items to create the preliminary module. ResultsPhase 1: we retrieved 8006 articles for the literature review, of which 35 were deemed relevant, resulting in 84 HRQoL issues being extracted to create the initial issue list. Semi-structured interviews with 18 HCPs and 28 patients with advanced melanoma resulted in 28 issues being added to the initial issue list. Following EORTC module development criteria, 26 issues were removed, and two issues were added after review by patient advocates.Phase 2: To ensure uniformity and avoid duplication, 16 issues were consolidated into eight items. Additionally, an independent expert contributed one new item, resulting in a preliminary module comprising 80 HRQoL items. ConclusionWe identified a range of HRQoL issues (dry skin, xerostomia, and arthralgia) relevant to patients with stage III/IV melanoma. Future module development phases will refine the questionnaire. Once completed, this module will enable standardized assessment of HRQoL in patients with (locally) advanced melanoma.

Brain Abscess

Brain abscesses can be caused by bacteria, mycobacteria, fungi, or parasites. The incidence of brain abscess varies from 0.4 to 0.9 cases per 100,000 population. The rate of infection increases in immunosuppressed patients. Approximately 25% of brain abscesses occur in children. Outcomes for patients with brain abscesses have improved over the past 50 years. Despite the advantages in diagnostics and treatment leading to improved outcomes in patients with brain abscess, the overall outcome and quality of life issues in patients with brain abscess remain a challenge in neurosurgery. In this article, the etiology, pathogenesis, diagnostic imaging, and treatment of brain abscesses are discussed.

17 Online CME Successful at Improving Nephrologist Understanding and Appreciation of Quality of Life Issues in Patients With Metabolic Acidosis and Emerging Treatment Options

17 Online CME Successful at Improving Nephrologist Understanding and Appreciation of Quality of Life Issues in Patients With Metabolic Acidosis and Emerging Treatment Options

Health-Related Quality of Life Issues of Patients Affected by Desmoid-Type Fibromatosis; Experiences from Two Countries

Health-Related Quality of Life Issues of Patients Affected by Desmoid-Type Fibromatosis; Experiences from Two Countries

Review of currently used standardized measures of quality of life after ventral incisional hernia repair: systematic review

After advancements in surgical and anaesthetics expertise and increased life spans among patients with complex abdominal surgeries, clinicians are left with the next main challenge, to how to improve the quality of life in patients with incisional hernia resulted from previous complex abdominal surgeries. To date there is no consensus over the choice of instrument and time frame for its administration in the literature. The aim of this review was to search for the current literature on measurement of quality of life in patients with ventral incisional hernia repair and to explore how effective each QOL instrument was for measuring impact on quality of life after ventral incisional hernia repair. In accordance with PRISMA guidelines two independent clinicians searched for Mesh and specific terms related to quality of life in patients with ventral incisional hernia. Search was made on PubMed, Embase and other research databases. Trial registries were searched for any published or unpublished trials. Literature search came up with 461 articles. After scanning and removal of duplication, 200 articles were subjected to inclusion and exclusion criterion and 59 articles were selected for qualitative analysis. Different scales for the measurement of quality of life after ventral incisional hernia repair were found. The incidence of incisional hernia itself was found to be the biggest determinant of poor quality of life, regardless of timescale of follow up and type of surgery performed. No single instrument was found to be complete enough to address the wide-ranging health-related quality of life issues in patients after incisional hernia repair.

Identification and assessment of health related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study

Identification and assessment of health related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study

Identification and assessment of health-related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study

PurposeSporadic desmoid-type fibromatosis (DTF) is a rare, chronic, non-metastasising, disease of the soft tissues. It is characterised by local invasive and unpredictable growth behaviour and a high propensity of local recurrence after surgery thereby often having a great impact on health-related quality of life (HRQL). This study aims to review currently used HRQL measures and to asses HRQL issues among DTF patients.MethodsA mixed methods methodology was used consisting of (1) a systematic literature review, according to the PRISMA guidelines (2009), using search terms related to sporadic DTF and HRQL in commonly used databases (e.g. Embase, Medline Ovid, Web of science, Cochrane Central, Psyc Info, and Google scholar), to provide an overview of measures previously used to evaluate HRQL among DTF patients; (2) focus groups to gain insight into HRQL issues experienced by DTF patients.ResultsThe search strategy identified thirteen articles reporting HRQL measures using a wide variety of cancer-specific HRQL tools, functional scores, symptom scales (e.g. NRS), and single-item outcomes (e.g. pain and functional impairment). No DTF-specific HRQL tool was found. Qualitative analysis of three focus groups (6 males, 9 females) showed that participants emphasised the negative impact of DTF and/or its treatment on several HRQL domains. Six themes were identified: (1) diagnosis, (2) treatment, (3) follow-up and recurrence, (4) physical domain, (5) psychological and emotional domain, and (6) social domain.ConclusionA DTF-specific HRQL tool and consensus regarding the preferred measurement tool among DTF patients is lacking. Our study indicates that HRQL of DTF patients was negatively affected in several domains. A DTF-specific HRQL measure could improve our understanding of short- and long-term effects and, ideally, can be used in both clinic and for research purposes.

Relationship Between Lifestyles That Promote Health and Quality of Life in Patients With Chronic Schizophrenia: A Cross-Sectional Study.

Over the last few decades, an increasing number of studies have examined quality of life in patients with chronic schizophrenia. However, little research has addressed the relationship between lifestyles that promote health and quality of life issues in these patients. The aim of this study was to investigate the relationships between lifestyles that promote health and quality of life in patients with chronic schizophrenia. A cross-sectional study design was used. The study was conducted at 10 hospital-based psychiatric rehabilitation units in northern Taiwan. In total, 357 participants completed the World Health Organization Quality of Life-BREF and the Health-Promoting Lifestyle Profile. This study examined the relationships among the six domains of the Health-Promoting Lifestyle Profile and the four domains of the Quality of Life-BREF using canonical correlation analysis. Data collection occurred between April 2013 and April 2014. The results of the canonical correlation analysis showed that the Health-Promoting Lifestyle Profile domains of nutrition, health responsibility, self-actualization, interpersonal support, exercise, and stress management were significantly related to the Quality of Life-BREF results, specifically in the physical, psychological, and social relationships and environment domains. Two canonical correlations were identified (the canonical correlation coefficients were .622 and .317), which showed that 38.6% of the variance in lifestyles that promote health and quality of life was shared. The results of this study may be useful to practitioners who are responsible for lifestyles that promote health and quality of life issues in patients with chronic schizophrenia.

Patient-Reported Symptoms in the Hematologic Malignancies

BACKGROUND: In patients with hematologic malignancies symptoms related to the disease and its treatment remain a major problem in patient care. With the advent of new treatment including immunotherapy and targeted therapies the potential for prolonged life and additional treatment is increasing. Patient self-reported symptom burden during periods of observation and treatment are infrequently reported but highly relevant to patient care. Assessment of patient-reported outcomes may allow for improvement in the management of symptoms and communication with providers.The Symptom Inventory Tool (SIT) is an assessment tool that captures patient's perceived symptom burden for real-time clinical intervention, taken at baseline and every 21 days or greater. It is comprised of 19 questions from the validated M.D. Anderson SIT (MDASI) (Cleeland CS, Cancer 2013.) and 8 additional questions added by CTCA for additional evaluation of patient symptoms.PATIENTS & METHODS:Patients reported symptoms intensity using the SIT: 19-item MDASI and 8 additional questions added by CTCA (constipation, swelling, mouth soreness, bleeding, sexual interest, family, hope & overall QOL). Symptoms were rated "at the worst" on an 11-point numeric scale ranging from 0 (’none present") to 10 ("as bad as you can imagine") in the previous 24 hours. SIT became an integral part of patient care at CTCA beginning in 2012.RESULTS: From 2012 to 2016, a total of 230 patients diagnosed with hematologic malignancies were evaluated at CTCA-ERMC. 108 patients that had two or more SIT data points were selected for analysis. A total of 830 assessments were analyzed. The assessments consisted of 108 completed at baseline, 107 completed at the 2nd follow-up, and 613 at 3rd follow-up or greater. Median age was 51 years (range, 18-78). Race: white (65%) black (32%) and other (2%). The average time since diagnosis was 41 months, and 32% of the patients had received prior systemic therapy. Table 1 shows the 5 most reported symptoms of entire sample with approximately 30% reported improvement from the baseline to the second assessment. Table 2 shows a subset of 35 patients that reported severe scores of > 8 for five symptoms that had clinically significant improvement from baseline to 2nd assessment.CONCLUSIONS: The SIT was successful in identifying symptom burden and interference with life issues in patients with hematologic malignancies. Early identification of patient symptom burden may allow for faster intervention and improvement in patient outcomes. [Display omitted] [Display omitted] DisclosuresNo relevant conflicts of interest to declare.

Quality of life in patients with erythema nodosum leprosum in Kuala Lumpur, Malaysia

Background:There is a paucity of data on quality of life issues in patients with leprosy suffering from erythema nodosum leprosum (ENL). Thus, we aim to study the effect of ENL on quality of life.Materials and Methods:This cross-sectional study was conducted in Hansen's Clinic, Hospital Kuala Lumpur between January 2010 and December 2013 among patients with multibacillary leprosy using the Dermatology Life Quality Index (DLQI).Results:A total of 153 patients participated with 31.4% suffering from ENL. The mean age at presentation was 40.5 ± 16.49 years. The mean DLQI was 7.1 ± 3.72. Patients with ENL were younger (mean age 36.5 vs. 42.4, P = 0.026), had higher mean bacteriologic index (4.3 vs. 3.8, P = 0.004), had physical deformities (47.9% vs. 31.4%, P = 0.049), and had higher mean DLQI score (9.1 vs. 6.2, P < 0.001). All the DLQI domains were higher in patients suffering from ENL except the treatment domain. Symptoms and feeling was the domain with the largest effect followed by daily activities and leisure. Personal relationship had the lowest effect.Conclusion:Quality of life impairment in patients with leprosy in Malaysia is moderate, with larger effect among patients with ENL. The impairment in ENL is comparable to itchy skin conditions such as urticarial and is worse than chronic skin disease such as psoriasis. Thus, it is essential that management of leprosy incorporate quality of life issues.

Fear of progression in patients with gastrointestinal stromal tumors (GIST): Is extended lifetime related to the Sword of Damocles?

Background. Gastrointestinal stromal tumors (GIST) are rare and before 2000, patients had a dismal prognosis with a median survival of less than a year after tumor metastasis. However, the median overall survival has increased to more than five years following the introduction of imatinib and other tyrosine kinase inhibitors (TKI). Little is known about the psychosocial consequences of treatment of GIST, but this is important because patients now are treated and live for longer. This cross-sectional study assessed quality of life, distress, and fear of cancer recurrence or progression in patients with GIST.Material and methods. Eighty-six patients with localized or metastatic GIST were asked to participate. Patients completed self-report questionnaires including the EORTC-Quality of Life Questionnaire, Hospital Anxiety and Depression Scale, Impact of Event Scale, Cancer Worry Scale, and Fear of Cancer Recurrence Inventory.Results. Fifty-four patients (median age 63.3 years) completed the questionnaires, 33 (61%) of whom were receiving TKI treatment at the time of the study. Overall, the GIST patients had a good global quality of life, but 28 patients had high levels of fear of cancer recurrence/progression. This high level of fear was not related to patient- or treatment-related variables. These patients experienced significantly higher levels of psychological distress, functional impairments, and difficulty making plans for the future than did patients with lower levels of fear.Conclusions. More attention should be paid to specific cancer-related problems, such as fear of cancer recurrence/progression, in addition to general quality of life issues in patients with GIST.

Communication about symptoms and quality of life issues in patients with cancer: provider perceptions.

This study used qualitative data collection and analysis methods to describe provider perceptions of addressing patient-initiated communication about common or sensitive symptom and quality of life issues (SQIs) in oncology. Eligible participants were health care providers who had participated in a larger trial testing a patient-centered technology to assess cancer SQIs and support self-care. Audio-recorded vignettes were simulated based on recorded clinic visits from the larger trial and presented during semi-structured cognitive interviews with each participant. Transcripts of the interviews were content analyzed. Twelve providers participated. Participants' responses included four themes: the institutional and clinical context, the complexity of addressing SQIs, strategies used to understand SQIs, and creating a plan to address SQIs. Participants felt that approaching SQIs inside and outside of the clinic required ongoing communication within a multidisciplinary team both to gather information and manage the SQI. Forming a relationship with the patient was one strategy to facilitate assessing SQIs. Most participants expressed a need for guidance about effective SQI communication. Providers perceived approaching SQIs as a routine part of interdisciplinary clinical care. The specific symptom and the complexity of its management influenced the process of assessing and managing SQIs. Findings have implications for institutional processes, training, evaluation, and program development.

Development and Validation of a Questionnaire to Measure Serious and Common Quality of Life Issues for Patients Experiencing Small Bowel Obstructions.

A validated questionnaire to assess the impact of small bowel obstructions (SBO) on patients’ quality of life was developed and validated. The questionnaire included measurements for the impact on the patients’ quality of life in respect to diet, pain, gastrointestinal symptoms and daily life. The questionnaire was validated using 149 normal subjects. Chronbach alpha was 0.86. Test retest reliability was evaluated with 72 normal subjects, the correlation coefficient was 0.93. Discriminate validity was determined to be significant using the normal subject questionnaires and 10 questionnaires from subjects with recurrent SBO. Normative and level of impact for each measured domain were established using one standard deviation from the mean in the normal population and clinical relevance. This questionnaire is a valid and reliable instrument to measure the impact of SBO on a patient’s quality of life related to recurrent SBOs; therefore establishing a mechanism to monitor and quantify changes in quality of life over time.

PO-0948: Health care professionals' evaluation of quality of life issues in patients with brain metastases

PO-0948: Health care professionals' evaluation of quality of life issues in patients with brain metastases

Health Care Professionals' Evaluation of Quality Of Life Issues in Patients with Brain Metastases

The Functional Assessment of Cancer Therapy – Brain (FACT-Br) is a brain specific Quality of life (QOL) tool used for both the primary brain tumour as well as metastatic brain tumour patient population. The purpose of this report is to evaluate the QOL issues health care professionals (HCPs) find most important when caring for brain metastases patients.

Main influencing factors and health-related quality of life issues in patients with oesophago-gastric cancer – as measured by EORTC tools

Aim of the studyTo assess influencing factors and main health-related quality of life (HRQoL) issues in patients with cancers of the oesophago-gastric region using the European Organization for Research and Treatment of Cancer (EORTC) quality of life questionnaire Core 30 (QLQ-C30) and its oesophago-gastric module (QLQ-OG25).Material and methodsPatients were qualified for this study based on the histological confirmation of oesophageal, oesophago-gastric or gastric cancers. Each patient filled out the Polish version of the EORTC QLQ-C30, the QLQ-OG25 module and a personal questionnaire. Patients were divided into groups based on gender, age, treatment intention, tumour localization, working status and level of education.ResultsOur study included 112 patients – 39 women (35%) and 73 men (mean age ± SD; 60.2 ±10.9). Thirty-five patients (31.3%) completed the questionnaires twice. Eighty-four (75%) patients had gastric cancer (GC), twenty-six (23.2%) oesophageal cancer (OC) and two (1.8%) cancer of the oesophago-gastric junction (OGJC). Eighty (71.4%) patients underwent surgical treatment prior to either chemo-, radio- or chemoradiotherapy. The Global Health Status scale of the QLQ-C30 inversely correlated with all the other QLQ-C30 and QLQ-OG25 symptom scales (r = –0.26 to –0.61; p < 0.05).ConclusionsThe main HRQoL problems of Polish OC, OGJC and GC patients are fatigue, insomnia, anxiety, and appetite and weight loss. Older age, receiving palliative treatment, having gastric cancer, being on retirement and having lower education are factors associated with higher symptom scores (worse symptoms) and thus poorer HRQoL.

Euthanasia: An Indian perspective.

In our society, the palliative care and quality of life issues in patients with terminal illnesses like advanced cancer and AIDS have become an important concern for clinicians. Parallel to this concern has arisen another controversial issue-euthanasia or “mercy –killing” of terminally ill patients. Proponents of physician-assisted suicide (PAS) feel that an individual's right to autonomy automatically entitles him to choose a painless death. The opponents feel that a physician's role in the death of an individual violates the central tenet of the medical profession. Moreover, undiagnosed depression and possibility of social ‘coercion’ in people asking for euthanasia put a further question mark on the ethical principles underlying such an act. These concerns have led to strict guidelines for implementing PAS. Assessment of the mental state of the person consenting to PAS becomes mandatory and here, the role of the psychiatrist becomes pivotal. Although considered illegal in our country, PAS has several advocates in the form of voluntary organizations like “death with dignity” foundation. This has got a fillip in the recent Honourable Supreme Court Judgment in the Aruna Shaunbag case. What remains to be seen is how long it takes before this sensitive issue rattles the Indian legislature.

Health Care Professionals' Evaluation of Quality of Life Issues in Patients With Brain Metastases.

BackgroundThe Functional Assessment of Cancer Therapy - Brain (FACT-Br) is a brain specific Quality of life (QOL) tool used for patients in the primary and metastatic cancer population. The purpose of this report is to evaluate the QOL issues health care professionals (HCPs) find most important when caring for brain metastases patients.MethodsHCPs were asked to rate whether each of the 23 FACT-Br subscale items were relevant to patients or not. In the survey, HCPs indicated the 5 to 10 top issues affecting the QOL of patients with brain metastases. Demographic information such as gender, years of experience, and health care specialty were recorded.ResultsA total of 46 HCPs participated in the study, 89% of HCPs ranked the need for help in caring for themselves as the most relevant item for patients with brain metastases. Other highly relevant items included the concern of getting headaches (81%) and weakness in arms or legs (78%). The lowest rated items included the ability to put thoughts together (8%), ability to write as they used to (11%) and also the ability to read as they used to (14%).ConclusionIt is very important to determine the issues that HCPs think are most important to patients in an attempt to harmonize these with those of patients. Future studies should compare the items that HCPs rate as most relevant to those that patients rate to ensure agreeability.

Quality of life issues in continence care

Urinary and faecal incontinence affect a significant proportion of the population. Both types of incontinence can limit activities of daily living, restrict the individual's ability to function in society and, as a consequence, affect quality of life. Simple treatments and management strategies can be effective, however non-disclosure of symptoms by patients and lack of active diagnosis by clinicians pose significant barriers to the identification of individuals with incontinence, resulting in poor access to treatment. This article will enable readers to identify opportunities within their own practice to focus on quality of life issues in patients with continence problems. Close examination of local practices will help identify goals for improving standards of care for these patients.