Psychosocial Survey Research Articles

Measuring Oncology Nurses' Psychosocial Care Practices and Needs: Results of an Oncology Nursing Society Psychosocial Survey

To develop and implement a survey of Oncology Nursing Society (ONS) members focused on their current practices and needs in relation to providing psychosocial care. Descriptive, cross-sectional. Web-based survey of ONS members. An invitation was e-mailed to 11,171 ONS members. Of those, 623 followed the link to the electronic survey and 64% of those (n = 401) completed the survey. An ONS Psychosocial Project Team was convened in 2009. One of the team's goals was to develop a survey to assess members' needs. The final survey consisted of 24 items, including five items related to demographic characteristics. Response formats included Likert-type scale, yes and no, and open-ended questions. Psychosocial care practices, education, and research. Psychosocial concerns are assessed using a variety of methods. Nurse perceptions regarding primary responsibility for providing psychosocial services differ by group. Barriers to the provision of psychosocial care exist at the individual, institutional, and community levels. Although nurses assess patients' psychosocial needs, multiple barriers still exist related to interdisciplinary communication; knowledge of the Institute of Medicine's recommendations; and resources at the individual, institutional, and community levels. The survey results were presented to the ONS Board of Directors, along with a three-year plan that included recommendations for future development of advocacy, practice, education, and research initiatives. Additional work is needed to effectively support RNs in their provision of psychosocial care to patients and families.

Psychosocial survey on erectile dysfunction among diabetic and non-diabetic attributes, Penang, Malaysia

Sex is a natural and basic drive of human beings. In Malaysia, erectile dysfunction (ED) is a common problem, affecting 16 to 47% of men above 40 years old. Erectile dysfunction (ED) is a common complication of diabetics, with prevalence ranging between 27 and 75%. Knowledge and perception are essential precursors of ED related quality of life. A cross-sectional study was conducted in Pulau Pinang, Malaysia, to produce the preliminary information to compare the knowledge and the perception of diabetic and non diabetic population towards sexual activity and the effect of ED on quality of life. Population based survey includes the entire male respondent in the community with age of 18 years and above. Investigator personally approached the respondents and asked them to complete self administered and anonymous pre-validated questionnaire. Statistical package for social sciences (version 15®) was used to analyze the data by adopting chi-square, univariate and multivariate analysis, ANOVA, T-test techniques, respectively. Data was collected from 1700 males aged between 20 years and above with response rate of 88.35%. The mean total knowledge score obtained by diabetics was significantly (p<0.001) higher (63.7% of the maximum possible total knowledge score) than non-diabetics score (53.8 %). Diabetics scored significantly (p=0.021) lower, regarding perception towards sexual activity (65.1%) than non diabetics (70%), also, diabetics scored non significantly higher scores regarding perception towards effect of ED on quality of life (61.3%) compared with non diabetics (59.7%). Mean score of total knowledge of non-diabetics was 10.23 ± 4.73 (that is, 53.8%) with maximum possible score of 19, while mean score of total perception of non-diabetics was 34.08 ± 5.51 (that is, 63.1%) with maximum possible score of 54. There was significant association between diabetics using medicine for ED (p<0.001). Viagra®(Seldenafil) was the most commonly used medicine between diabetics and non diabetics. It was concluded that although diabetics patients are more knowledgeable regarding ED, they have lower perception towards sexual activity and less satisfaction with their sexual life. Their perception regarding the effect of ED on their quality of life is more than that of non-diabetics. Key words: Diabetics mellitus, perception and quality of life, erectile dysfunction, erectile and diabetics, diabetics and quality of life, erectile dysfunction treatment.

A methodology to study noise annoyance and to perform Action Plans follow up using as input an existing survey and noise map: Application to the city of Málaga (Spain)

The main purpose of this work is to establish a methodology which uses the advantages of stratified sampling to study noise perception. Taking as a starting point the results of an existing psychosocial survey of a large population sample, the proposed procedure consists in stratifying the original sample into homogeneous groups (clusters or classes) as far as noise perception/annoyance, and then select some representatives within each group. Those representatives will be used for further inquiries relating to noise annoyance perception (i.e. action plans follow up) and may facilitate further data acquisition making it faster and cheaper to acquire without significant precision loss. According to the European Directive 2002/49/EC, action plans for noise perception and noise level conflicts reduction shall be based both on existing noise maps and existing psychosocial surveys. It is in this context that the proposed methodology can be useful, since it will allow action plans follow up and thus evaluate in a fast and cost effective way the impact of action plans on the population. The methodology has been applied to the Málaga psychosocial survey results and the variability of estimates when working with subsamples (representatives from each group) has been studied. It is observed that performing a stratified sampling technique on the clusters optimizes the cost/precision ratio of estimators.

Impacto de la reconstrucción mamaria sobre la autoestima y la imagen corporal en pacientes con cáncer de mama

El tratamiento quirúrgico del cáncer de mama puede alterar el aspecto físico de las pacientes y producirles importantes secuelas psicológicas. Así, para comprobar si el nivel de satisfacción con el resultado estético, así como la autoestima o la imagen corporal de estas pacientes difería según el tipo de cirugía realizada (mastectomía unilateral o reconstrucción mamaria), se estudiaron un total de 72 pacientes. Para ello se empleó una Encuesta Psicosocial, la Escala de Autoestima de Rosenberg (EAR), el Cuestionario de Calidad de Vida de la EORTC (QLQ-BR23), y el Test de Medición del Grado de Satisfacción Corporal. En general, las pacientes reconstruidas mostraron una mayor satisfacción estética, así como una mayor autoestima y un menor deterioro de su imagen corporal.

Comparison of Anxious and Depressive Symptomatology Among Pretransplant Hepatic Patients and Their Relatives

Objective We sought to compare the anxiety and depressive symptoms of patients undergoing pretransplant evaluation with those of their closest relatives. Materials and Methods We assessed 51 patients with hepatic cirrhosis and 51 relatives who were the main care giver for each patient. All subjects were assessed during the interval when the patients were hospitalized to undergo the medical assessment to determine their inclusion on the waiting list for liver transplantation. In both groups, we used a “Psychosocial Survey” and the “Hospital Anxiety and Depression Scale.” Results Significant differences were observed in anxiety ( P = .001), but not in depression ( P = .820). Specifically, relatives presented higher levels of anxiety compared with the hepatic patients. Conclusion The relatives were worse off psychologically than the patients.

Influence of Relatives' Anxious Symptomatology on the Quality of Life of Pretransplant Hepatic Patients

Objectives We sought to analyze the influence of anxiety symptoms of relatives of patients undergoing a pretransplant study on the quality of life of the hepatic patients body pain, physical role, mental health, general health, vitality, social functioning, emotional role, and physical functioning. Materials and Methods We assessed 2 groups: 51 patients with hepatic cirrhosis and 51 of their closest relatives who were studied while the patients were hospitalized to undergo the pretransplant study. We used a “Psychosocial Survey” (in both groups), the “Hospital Anxiety and Depression Scale” (HADS) in the relatives, and the “SF-36 Health Survey” (in the patients). Results The results showed that the patients whose relatives presented clinical levels of anxiety showed the worst quality of life, specifically for the dimensions “mental health” ( P = .016) and “emotional role” ( P = .041).

Does weight status influence weight-related beliefs and the consumption of sugar-sweetened beverages and fast food purchases in adolescents?

OBJECTIVE: To determine if weight status affects the relationship between weight-related beliefs and consumption of sugar-sweetened beverages (SSB) and fast and convenience store food purchases (FCFP). DESIGN: Observational, cross-sectional. SETTING: Twin Cities Metropolitan area, Minnesota, USA. METHODS: Body composition and psychosocial survey were obtained for 345 adolescents. General Linear Models tested adjusted (age and sex) associations between weight-related beliefs and consumption of SSB and FCFP. Significant associations were tested for moderation by weight status. RESULTS: SSB was positively related to perceptions that people worry too much about their weight (β = 0.103, p = 0.016), with no moderation present. FCFP were positively associated to perceived barriers to maintaining a healthy weight (β = 0.042, p = 0.004) with a subsequent significant interaction by weight status. Stratified models showed a significant association between perceived barriers to a healthy weight and FCFP for overweight adolescents (β = 0.345, p = 0.022). CONCLUSIONS: Addressing perceived barriers to a healthy diet may lead to important risk reduction.

Path analysis on influential factors of mental stress in submariners

Objective To probe into the influential factors of mental stress in submariners and the ways of interaction among them.Methods 460 submariners were evaluated by Psychosocial Stress Survey for Groups (PSSG),Life Event Scale(LES),Eysenck's Personality Questionnaire(EPQ),Trait Coping Style Questionnaire (TCSQ)and Perceived Social Support Scale(PSSS).A database was established with SPSS15.0 and a path analysis was employed with Amos7.0.Results ①There was a significant difference in the different rank groups on mental stress in submariners(F=12.12,P＜0.01).including the officers and senior noncommissioned officers group(51.46±25.19)was the highest,and the conscripts group(35.63±16.94)Wag the lowest.②The mental stress in submariners was positively correlated with neurotism(r=0.768),disappearing coping style(r=0.634),life event(r=0.404)and psychoticism(r=0.329),and negatively correlated with social support(r=-0.326),positive coping style(r=-0.325)and extraversion(r=-0.117).③Neurotism,life event,social support,disappearing coping style,psychoticism,extraversion,positive coping style had total effects on mental stress in submariners(r=0.724,0.399,-0.135,0.119,0.055,-0.027,-0.026 respectively).Conclusion Mental stress in submariners Wag affected by life event,personality,coping style,social support and other factors. Key words: Submariner; Mental stress; Life event; Personality; Coping style; Social support

Attitude Toward Xenotransplantation in Kidney and Liver Patients on the Transplant Waiting List

Introduction The deficit in transplant organs is encouraging research into stem cells and xenotransplantation. However, many studies have shown that using animals for human transplantation could be rejected by society. The objective here was to analyze the attitude of patients on the waiting list toward a possible transplant of an organ of animal origin. Materials and methods Patients on the waiting list for kidney and liver transplants including last year ( n = 96) underwent a direct interview by an independent health professional from the transplant unit. Using a psychosocial survey, an evaluation was made of attitudes toward donation of organs of animal origin and its various options. Student t test and the chi-square test were used for analysis. Results If results from xenotransplantation could be superimposed onto those of human transplantation, 71% would accept such an organ. In the case of the kidney, 83% would accept, 4% would not, and 13% have doubts; as opposed to 60%, 12%, and 28%, respectively, of liver cases ( P < .05). Supposing that the results were worse than in human organs, only 26% would accept an animal organ. Thus, for kidney, 33% would accept it, 48% would not, and 20% would have doubts; and for liver, it would be 20%, 50%, and 30%, respectively. In a life-threatening situation 98% would accept an animal organ as a bridge of hope in the wait for a human organ. In addition, if the organ functioned correctly, 98% would keep the animal organ, thus avoiding an intervention to substitute a human organ. Conclusion If xenotransplantation became a clinical reality, acceptance of an animal organ by patients on the waiting list would be low, especially if the results could not be superimposed onto human ones. Only its use as a bridge until the arrival of a human organ would increase its acceptance.

Proactive routine monitoring and intervention to reduce the psychosocial impact of cancer therapy

Much of the psychosocial morbidity experienced by cancer patients goes undetected and therefore untreated. This paper describes infrastructure to routinely screen patients for psychosocial problems and provide targeted intervention in the cancer care setting. Cancer patients will complete a psychosocial screening survey via touchscreen computer at three outpatient visits. A report containing a summary of their responses, score interpretation and recommended management strategies will be printed immediately and placed in their file for follow-up by their health care team. Centres will be able to track changes in their patients psychosocial outcomes over time, and in response to changes in service delivery. Benchmarking reports will be produced annually to feed back performance data to individual centres on their patients' psychosocial outcomes.

Attitude Toward Living Related Donation of Patients on the Waiting List for a Deceased Donor Solid Organ Transplant

Introduction Spain is the country with the highest rate of donation from deceased individuals. However, given the deficit in organs, living donation is being encouraged. Our objective was to analyze attitudes toward living donation among patients on the waiting list for a transplant. Materials and methods Patients on the waiting list for a kidney or liver transplant ( n = 96; 46 kidney and 50 liver) in the last year had their attitudes toward living donation evaluated through a psychosocial survey performed in a direct interview with an independent health professional from the transplant unit and analyzed by Student t test and the chi-square test. Results Ninety-one percent were in favor of donating their organs when they die, 6% had doubts, and the remaining 3% were against it. Twenty percent would accept living donation from a family member (32% in liver vs 7% in kidney; P < .05), despite 89% of them accepting that there would be a risk to the family member. Twenty percent reported that a family member had suggested donating, but the patient was opposed. Finally, only 6% considered living donation to be their first choice, 42% did not consider this option. Up to 96% would donate an organ to a family member if they were requested to do so. Conclusion Patients on the waiting list are not favorable to living related donation for themselves, although members of their family have proposed it to them. However, the liver patient is more prepared to accept it, possibly because that patient has no other alternative as do kidney patients have dialysis. Even so, they are favorable toward donating a living organ if a family member were to request one. In general, living donation is not being proposed to these patients as a real option, partly because of their doctors.

Health-related quality of life in adults after repair of congenital diaphragmatic defects—a questionnaire study

Background and Aim Long-term respiratory, gastrointestinal, and vertebral sequelae are common after repair of congenital diaphragmatic defects (CDDs). The aim of this study was to assess the effect of these sequelae on the health-related quality of life (HRQoL) of adult survivors after CDD repair. Materials and Methods A questionnaire, including 36-Item Health Survey Form (SF-36), 36-item Gastrointestinal Quality of Life Index (GIQLI), 55-item Psychosocial Survey, 9-item survey for Respiratory Symptoms–Related Quality of Life Index, and a symptoms query, was sent to 94 adult survivors of CDD and to 400 healthy control subjects. One SD lower than the age-adjusted national average in the 36-Item Health Survey Form score for physical or mental health was considered as low HRQoL. Results Sixty-nine patients with CDD (72%) and 162 (41%) control subjects returned the questionnaire. The initial presentation was critical in less than 10% of patients with CDD. Forty-five patients with diaphragmatic hernia had primary closure; in 1 patient with diaphragmatic hernia, a patch was used. Twenty-four patients had plication of diaphragmatic eventration. The incidence of gastroesophageal reflux (20% vs 2%), recurrent intestinal obstruction (7% vs 0%), and recurrent abdominal pain (12% vs 2%) was significantly higher in patients with CDD than in control subjects, whereas no difference in the incidence of respiratory, musculoskeletal, or other health problems not associated with CDD was found. Scores in GIQLI, Psychosocial Survey, and Respiratory Symptoms–Related Quality of Life Index did not differ between patients with CDD and control subjects. Health-related quality of life was low in 17 (25%) of 69 patients with CDD, which exceeded 1.5 times the expected value. There was no correlation between the type or severity of the primary defect and HRQoL at the time of the study. Conclusion Most adults with repaired CDD have good or satisfactory HRQoL. Congenital diaphragmatic defect–associated symptoms with or without acquired diseases significantly impair HRQoL in one fourth of the patients.

Health-related quality of life in adult patients with esophageal atresia—a questionnaire study

Background/Purpose Long-term sequelae caused by associated anomalies or respiratory and gastrointestinal disorders are common after the repair of esophageal atresia (EA). The aim of this study was to assess the effect of these sequelae on the health-related quality of life (HRQoL) of patients with EA. Methods A questionnaire including a 36-item Gastrointestinal Quality of Life Index, a 15-item Respiratory Symptoms–Related Quality of Life Index, and a 36-item psychosocial survey and a symptoms query was sent to 159 patients with EA with or without tracheoesophageal fistula (TEF), who were operated on between 1949 and 1979, and to 400 healthy control subjects. A 36-item Health Survey Form was sent to patients with EA only and the results were compared with values of the general Finnish population. Results A total of 128 patients with EA (80%) and 162 control subjects (41%) returned the questionnaire. Median age [patients with EA, 38 (range, 24-54) years; control subjects, 36 (20-56) years] and sex distribution (M/F of patients with EA, 57:70; control subjects, 63:99) were comparable. Of the 128 patients, 115 (91%) had EA with a distal TEF, 8 (6%) had EA without TEF, 3 (2%) had EA with proximal and distal TEF, and 2 (1%) had TEF without EA. The types of esophageal repair were distributed as follows: primary end-to-end anastomosis (n = 112), colon interposition (n = 10), gastric tube (n = 3), thoracic skin tube (n = 1), and fistula closure only (n = 2). Thirty-eight patients had significant associated anomalies. Gastrointestinal Quality of Life Index scores did not differ statistically between patients with EA and control subjects. However, the incidence of regurgitation (17% vs 10%) and dysphagia (10% vs 2%) was significantly higher in patients with EA ( P < .5). Low Respiratory Symptoms–Related Quality of Life Index was found in 10 of 128 patients with EA and in 3 of 163 control subjects ( P < .05). Psychosocial survey scores and the incidence of acquired diseases did not differ between the groups ( P = NS). The 36-item Health Survey Form indicated low HRQoL in 19 (15%) of patients with EA (expected value, 16%). Of the 19 patients with EA with low HRQoL, 8 (42%) had significant congenital or EA-associated diseases and 11 (58%) had acquired diseases. The type of EA or esophageal conduit was not related to HRQoL. Conclusions Most adult survivors of EA or TEF repair have a normal quality of life. Morbidity from esophageal functional disorders and respiratory disorders with or without acquired diseases impairs HRQoL in 15% of patients with EA.

Psychosocial Factors in Decision-Making of Patient Eligibility for Allogeneic Bone Marrow Transplantation.

Oncologists specializing in bone marrow transplants (BMT) make daily decisions about appropriate medical candidates for allogeneic BMT based on clinical criteria. It is not clear how, and if, patient eligibility decisions are made based on psychosocial criteria. Although setting limits of patient eligibility based on psychosocial criteria has been researched in solid organ transplantation, data is sparse in BMT. This report focuses on physician responses to a psychosocial survey. An IRB approved survey was mailed to members of the ASBMT (North America) mailing list. Of 704 members, 663 were deemed viable respondents: excluded were non-physician members and physicians specializing in research or not working with allogeneic BMT patients. These surveys were mailed in April 2004. As of 7/6/04, 253 surveys were returned, representing a 38% response rate. Average age of responders was 47 years. Average number of years experience in BMT was 14, with a range of 2–39 years. 17 case vignettes were presented. These vignettes asked whether or not it was appropriate to proceed with allo BMT (assuming an appropriate donor was available) based on a specific psychosocial problem. In virtually every case vignette, at least 10% of respondents stated they would not proceed with allogeneic BMT based on the issues raised in the vignette. In seven case vignettes, the majority of respondents stated that they would recommend not proceeding with BMT. The general theme/construct of these 7 vignettes appears to be ability to comply with treatment plans. Specifically, the following were case vignettes in which the majority of respondents recommended not to proceed with transplant: no caregiver available to assist with the patient post-transplant (do not proceed = 70%); the patient is actively alcoholic (do not proceed = 62%); the patient is non-compliant (do not proceed = 75%); the patient is currently suicidal (do not proceed = 84%); the patient is currently using addictive illicit drugs (do not proceed = 73%); the patient has mild dementia (do not proceed = 55%); the patient cannot pay for the transplant (do not proceed = 52%). Conversely, the following case vignettes were less worrisome to the survey respondents, and in general represented surmountable psychosocial and/or clinical issues. These vignettes included; a history of prior suicidal attempts although not currently suicidal (proceed with transplant = 86%); controlled schizophrenia (proceed with transplant = 83%); daily marijuana use (proceed with transplant = 82%); smokes tobacco (proceed with transplant = 79%); morbid obesity (proceed with transplant = 71%); major depression (proceed with transplant = 84%). These findings underline the importance of post-transplant longitudinal care in determining the ultimate success of an allogeneic BMT, and underscore their importance in patient eligibility decision-making. These findings also illustrate that psychosocial variables play a significant role in determining patient eligibility for allogeneic BMT and that there is no clear-cut consensus on this topic, highlighting the need for ongoing clinical research.

The experience of loss and anticipation of distress in colorectal cancer patients undergoing genetic testing

Objective The purpose of this paper is to describe pretest psychological functioning in a sample of colorectal cancer (CRC) patients undergoing genetic testing. We also explored the relationship among demographic, medical, family history and loss variables and current pretest distress, and those related to anticipated posttest distress. Methods This paper reports pretest findings from a prospective, longitudinal psychosocial survey. Data are presented on 220 CRC patients at pretest. Results We found a subgroup of CRC patients that are currently distressed and anticipate becoming depressed if they receive a positive genetic test result. There were significant associations among pretest distress, family history of CRC and loss related to CRC and anticipation of becoming depressed at posttest. Conclusions The findings suggest that a subgroup of CRC patient's experience or anticipate distress that may warrant attention. Family history of CRC and losses related to CRC may be important indicators of posttest adjustment.

Hepatitis B and C infections among homeless adolescents.

The lifestyle of homeless adolescents places them at high risk for contracting serious illnesses. This study sought to determine the hepatitis status and predictors of hepatitis infection among 150 homeless adolescents. Each participant took a psychosocial survey and provided a venous blood sample. Most respondents (95%) had engaged in sexual intercourse; approximately 36% indicated they had exchanged sex for food, shelter, or drugs. Youth reported a high rate of consistent condom use, however, 22% tested positive for hepatitis B or C. Homeless youth should be considered a high-risk group for hepatitis B or C virus infection. As hepatitis B vaccination programs have been targeted at school-based youth, most homeless youth are missed by these efforts. Targeted programs are needed to immunize this high-risk group.

Testing the Task and Ego Orientation in Sport Questionnaire (TESOSQ) Measurement Model With Incomplete Data: An Application of Maximum Likelihood-Based Estimation Procedures

Nearly all psychosocial survey datasets contain missing data. Recent advances in statistical theory, and implementation of the theory in modeling software, have made it possible to handle various types of missing data with the proviso that data are missing at random. This study presents an application of a confirmatory factor analysis with incomplete data, demonstrating the utility of several maximum likelihood-based missing data estimation procedures: multigroup, single group, and expectation maximization multiple-imputation. The substantive example used to demonstrate these procedures was a 2-factor measurement model of achievement goal orientation in sports with a sample size of 1,002. Of the total sample, 124 participants (12%) had incomplete data in the form of nonresponse. Initial analysis showed that the data missing were completely random. Subsequent modeling of the incomplete data revealed that, across the 3 data estimation procedures, parameter estimates were remarkably similar and standard errors of estimates were small in magnitude, suggesting the consistency of these procedures in analyzing incomplete data.

An interdisciplinary study of urban noise pollution: part II

An interdisciplinary research in two stages was carried out in Cordoba City, Argentina, in four zones with different urban noise characteristics. First, statistical noise measurements as well as a psychosocial survey, the data which were analyzed through the Multiple Correspondence Factorial Analysis (AFCM), allowed earlier approach to the subject (Part I).’ In the second stage, reported in this paper, data from the previous one were studied in depth: 1) Through a Tri‐Dos post factorial method based on the AFCM results, profiles of people exposed to urban noise were determined; this procedure shows to be suitable for detecting risk groups in epidemiological researches; 2) A correlation analysis among noise descriptor values and loudness judgements for certain stablished periods of the day well described the performance of indices and percentiles according to the zones, although it was not possible to find an unique predictor.

Psychosocial adjustment of post-poliomyelitis ventilator assisted individuals.

The effect of severe disability, tracheostomy, and ventilator use on psychosocial functioning, gainful employment, life satisfaction, and perceived well-being were studied for a population of 395 ventilator assisted post-poliomyelitis individuals (PVAIs). Standard psychosocial survey instruments and other general questioning were used. Two-hundred-seventy-three physically intact health care professionals served as controls. They were surveyed about their own life satisfaction and perceived well-being and were asked to judge how severely disabled ventilator assisted individuals would respond to such questioning. The relative distress associated with ventilator use was also evaluated in a similar manner. Fifty six of 380 responding PVAIs (14.7%) expressed dissatisfaction with their lives in general. This compares with 8.5% of the controls and 7% of a previously studied general population. The controls significantly underestimated the patients' life satisfaction and well-being scores and significantly overestimated the relative hardship associated with ventilator use. The post-polio individuals using noninvasive methods of assisted ventilation were also significantly more satisfied with their lives than were those ventilated via tracheostomy. Fifty-seven of 148 (39%) individuals married and 165 of 395 (42%) individuals were gainfully employed during long-term ventilator use. We conclude that many severely disabled post-poliomyelitis ventilator users lead productive lives. The vast majority have a positive affect and are satisfied with life. Noninvasive ventilatory support alternatives may lend to greater life satisfaction for these individuals than ventilation delivered via an indwelling tracheostomy. Health care professionals may significantly underestimate their patients' satisfaction with life and this may have a bearing on patient management.

Quality of life in patients on permanent home parenteral nutrition.

A psychosocial survey of patients on permanent home parenteral nutrition (HPN) has been made to assess the quality of life in these patients. All patients on permanent HPN in the period August 1978 to August 1979, including 7 women and 6 men, age range 24-62 yr (median 53) were interviewed, as well as partners of 11 patients who were married or cohabiting. The duration of HPN ranged from 2-43 mon (median 24 mon). They were asked specific questions about physical symptoms, social and leisure activities, interpersonal relationships, sexuality, psychological problems, and feelings about HPN. None had an outside job, but 6 (46%) did most of the housekeeping. Some physical distress was recorded in almost all patients, but 9 (69%) considered themselves healthy or fairly healthy, whereas 4 (31%) felt diseased. Social and leisure activities were normal or only slightly impaired in most. Sexual activity had ceased completely in 5 above 55 yr, in association with onset of the disease; younger patients displayed normal and unchanged sexual activity. Psychological symptoms were recorded in 6 (46%), major symptoms in 4 (31%). Seven partners considered HPN to be a moderate or severe burden, mainly psychological changes in the patient that caused marital tension in 3 cases. Criteria for quality of life were: 1) no major physical distress, 2) no major psychological symptoms, 3) no substantial restriction of social and leisure activities, 4) ability to accept HPN, 5) overall satisfaction with conditions of life. Nine patients who fulfilled at least 3 of these criteria were considered to have a fair quality of life, 4 who complied with less than 3 of the criteria a poor quality of life. The interviews were repeated at intervals of 6-10 mon in 9 patients, and revealed no systematic improvement or deterioration of quality of life during HPN.