The Lived Experience of Informal Caregivers of People Who Have Severe Mental Illness and Coexisting Long-Term Conditions: A Qualitative Study.

BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. RESULTS: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. CONCLUSION: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

The lived experience of severe mental illness and long-term conditions: a qualitative exploration of service user, carer, and healthcare professional perspectives on self-managing co-existing mental and physical conditions.

BACKGROUND: People with severe mental illness (SMI), such as schizophrenia, have higher rates of physical long-term conditions (LTCs), poorer health outcomes, and shorter life expectancy compared with the general population. Previous research exploring SMI and diabetes highlights that people with SMI experience barriers to self-management, a key component of care in long-term conditions; however, this has not been investigated in the context of other LTCs. The aim of this study was to explore the lived experience of co-existing SMI and LTCs for service users, carers, and healthcare professionals. METHODS: A qualitative study with people with SMI and LTCs, their carers, and healthcare professionals, using semi-structured interviews, focused observations, and focus groups across the UK. Forty-one interviews and five focus groups were conducted between December 2018 and April 2019. Transcripts were coded by two authors and analysed thematically. RESULTS: Three themes were identified, 1) the precarious nature of living with SMI, 2) the circularity of life with SMI and LTCs, and 3) the constellation of support for self-management. People with co-existing SMI and LTCs often experience substantial difficulties with self-management of their health due to the competing demands of their psychiatric symptoms and treatment, social circumstances, and access to support. Multiple long-term conditions add to the burden of self-management. Social support, alongside person-centred professional care, is a key facilitator for managing health. An integrated approach to both mental and physical healthcare was suggested to meet service user and carer needs. CONCLUSION: The demands of living with SMI present a substantial barrier to self-management for multiple co-existing LTCs. It is important that people with SMI can access person-centred, tailored support for their LTCs that takes into consideration individual circumstances and priorities.

The utility and cost of routine follow-up procedures in the surveillance of ovarian and primary peritoneal carcinoma: a 16-year institutional review.

BACKGROUND: The purpose of this study was to evaluate the number of ovarian cancer and primary peritoneal cancer (PPC) progressive disease cases identified via routine follow-up procedures and the corresponding cost throughout a 16-year period at a single medical institution. METHODS: Previously undiagnosed epithelial ovarian (n=241), PPC (n=23), and concurrent ovarian and uterine (n=24) cancer patients were treated and then followed via CA-125, imaging (e.g., CT scan, chest X-ray), physical examination and vaginal cytology. RESULTS: In the group of 287 patients, there were 151 cases of disease progression. Serial imaging detected the highest number of progressive disease cases (66 initial and 45 confirmatory diagnoses), but the cost was rather high ($13,454 per patient recurrence), whereas CA-125 testing (74 initial and 20 corroborative diagnoses) was the least expensive ($3,924) per recurrent diagnosis. The total cost of surveillance during the 16-year period was nearly $2,400,000. CONCLUSION: Ultimately, serial imaging and the CA-125 assay detected the highest number of ovarian cancer and PCC progressive disease cases in comparison to physical examination and vaginal cytology, but nevertheless, all of the procedures were conducted at a considerable financial expense.

Bevacizumab, paclitaxel and carboplatin for advanced ovarian cancer: low risk of gastrointestinal and cardiovascular toxicity.

The purpose of this preliminary study was to retrospectively assess the incidence of bowel perforation and hypertension in two separate advanced ovarian cancer patient populations following first-line therapy, comprising paclitaxel, carboplatin and bevacizumab. The first 20 patients were treated with six cycles of paclitaxel (175 mg/m2), carboplatin (AUC of 5 i.v.), and bevacizumab (15 mg/kg of body weight); q21 days per an independent protocol. The subsequent patients (n = 12) were administered weekly paclitaxel (80 mg/m2), carboplatin (AUC of 5 i.v.) every four weeks, and bevacizumab (10 mg/kg of body weight) every two weeks for six cycles according to a separate, independent protocol. Bevacizumab was not added to either chemotherapy regimen until cycle 2. In both groups patients who achieved a complete response, partial response or stable disease at the conclusion of induction therapy received bevacizumab (10 mg/kg) and paclitaxel (135 mg/m2) q21 days as maintenance therapy. A total of 170 cycles (median = 6; range 3-6) of primary induction chemotherapy, 140 of which contained bevacizumab, were administered. Moreover, 206 cycles (median = 9; range 1-12) of maintenance chemotherapy have been delivered to 28 patients thus far. There was no incidence of GI perforation and only two patients demonstrated clinically significant hypertension. Previous studies involving bevacizumab have raised concerns regarding bowel perforations and hypertension. However, we did not encounter difficulties with either of these complications. While we recognize that the risk for bowel perforation remains in the 5-11% range, the study's preliminary results suggest that first-line treatment of advanced stage ovarian carcinoma with bevacizumab can be safely administered.

A phase II, multicenter trial of weekly topotecan in patients with recurrent platinum-sensitive epithelial cancers of the ovary and peritoneum.

The purpose of this study was to evaluate the response rate and toxicity of weekly topotecan in patients with recurrent platinum-sensitive epithelial cancers of the ovary and peritoneum. Thirty-nine platinum-sensitive recurrent ovarian cancer patients received topotecan (4 mg/m(2)) intravenously day 1, day 8, day 15, every 28 days. Colony-stimulating factors were excluded from the study. Clinical response was assessed by clinical, serologic, and radiographic measures at the conclusion of cycle four. Patients received 136 cycles of topotecan (median = 3; range 1-6) and were evaluated for response and toxicity. Median number of prior regimens was one. Grade 3/4 neutropenia developed in 3 (7.7%) patients. Grade 3 thrombocytopenia was seen in one (2.6%) patient, with no incidence of grade 4 thrombocytopenia. There was no evidence of grade 3 anemia, but one patient (2.6%) was associated with grade 4 anemia. There was no grade 3 or 4 neuropathy. We encountered 18 dose reductions following less than or equal to grade 2 myelosuppression, necessitating the removal of eight (20.5%) patients prior to cycle four. Twenty-one (53.8%) patients were removed from the study due to disease progression. Following the completion of cycle four, four (10.3%) patients demonstrated stable disease and four (10.3%) patients exhibited a partial response. There were no complete responses. Median disease-free survival was 12 weeks. Weekly topotecan (4 mg/m(2)) demonstrated modest activity and was moderately well tolerated. However, the significant number of dose reductions and high incidence of patients who demonstrated disease progression suggests additional modifications with this specific regimen are necessary.

Tuberculosis mimicking cervical carcinoma--case report.

Tuberculosis is a chronic bacterial infection that primarily results in pulmonary disease. Although there are several reported cases of extra-pulmonary tuberculosis, very few reports have described this disease in the female genital tract. We present a case involving a 67-year-old woman who presented with vaginal discharge, abdominal discomfort, and a pelvic mass in 2006. Clinically, cervical carcinoma was suspected, but pathologic diagnosis eventually revealed tuberculosis of the cervix. Tuberculosis is associated with a significant inflammatory reaction, which may mimic a gynecologic malignancy on exam or with diagnostic imaging. Despite the rare incidence, tuberculosis of the cervix should be considered in the differential diagnosis when cervical carcinoma is initially suspected.

Aimed movements to visual targets in hemiplegic and normal children: is the "good" hand of children with infantile hemiplegia also normal?

The accuracy, reaction and movement time of pointing movements to visual targets were examined in children aged 3-13 yr with infantile hemiplegia and compared to those of comparably aged normal children. Hemiplegic children pointed with the "good" hand (i.e. ipsilateral to the lesion). Half the normal children used the preferred hand, half the non-preferred hand. Movements were made with unrestricted/restricted visual feedback, when movement distance was short/medium/long, and when number of target alternatives were 2/4/8. Normal children using the preferred hand were more accurate but reacted more slowly than children using the non-preferred hand. The performance of most of the hemiplegic children with bilateral and/or unilateral lesions was impaired; degree of accuracy was related to the extent of the brain lesion; and reaction time was related to the level of intelligence. It was concluded that unilateral lesions in children can result in bilateral visuomotor impairment.

Cavernous lymphangioma of the vulva.

Lymphangiomas are rare benign proliferations of the lymphatic system. Three types are generally acknowledged: circumscriptum (or capillary), cavernous, and cystic. The management of these lesions depends on type, size, and anatomical location. We present a case of cavernous lymphangioma of the right labium majus in a young woman with no history of radiation therapy or other pathology, which was treated by wide resection.

Ovarian metastases are rare in stage I adenocarcinoma of the cervix.

Over a 32-year period at the University of California, Los Angeles Medical Center, all cases of adenocarcinoma and adenosquamous carcinoma of the uterine cervix were reviewed to determine the incidence of ovarian metastases in stage I disease. One of 25 patients (4.0%) who underwent an exploratory laparotomy and radical hysterectomy had a microscopic ovarian metastasis. A literature review identified nine additional patients who had ovarian metastases and stage I adenocarcinoma of the cervix. Including our series, the overall reported rate of ovarian metastases is 1.8%. All ten patients had at least one of the following additional characteristics: They were postmenopausal, they had adnexal pathology, or they had positive pelvic lymph nodes. Thus, ovarian preservation is warranted in premenopausal patients who do not have ovarian pathology or evidence of other metastatic disease at surgery. Bilateral oophorectomy may be performed if frozen-section examination of enlarged or suspicious nodes documents metastases. If the ovaries are left in the pelvis at the completion of the surgical procedure and microscopic spread to other pelvic tissues is documented, pelvic irradiation can be administered.

Visually guided reaching and tactile discrimination performance in the monkey: the effects of removals of parietal cortex soon after birth.

Unilateral removals of parietal cortex were made soon after birth in 5 monkeys. The inferior parietal lobule was removed alone or together with the superior parietal lobule; the second somatosensory area (SII) was removed alone or together with posterior parietal surface cortex. Neurological changes were observed; and the animals were assessed quantitatively for their accuracy of reaching for visual targets and for their ability to discriminate between objects by palpation in the dark. Each hand was evaluated separately. Disorders of reaching (confined to the contralateral hand) were found to persist longer than in animals with comparable removals made at a later age; whereas the ability to make tactile discriminations was not more severely impaired after an early than a late ablation.

Differential accuracy of aimed movements to visual and somatic targets in young children.

Children, aged 2.5-8 years, were required to touch accurately a target located either on their bodies or on the chair in which they sat. Movements were made when visual information was: 1. complete (target lit for 3 s, room illuminated); 2. partial (target lit for 3 s, room dark); 3. reduced (target lit for 0.7 s, room dark); and finally, when the target was somatically specified. Movements to visible targets did not differ in any important way as a function of target location with respect to on/off body. Accuracy improved with age to visually but noto somatically specified targets, decreased with decreasing availability of visual information, and was poorest to somatically specified targets. We conclude that during development, the sense-modality through which the target is specified and the visibility of the arm/hand during the movement, but not the personal/extra personal visible space in which the target is located, are important determinants of reaching performance.

Confusion of laterally inverted mirror-images: a relationship to brain anatomy?

Whereas in the monkey brain the representation of spatial direction (left/ right) is the same for visual and for tactual inflow, in the human brain visual and tactual lateral directions are not aligned with respect to one another. This anatomical feature of the human brain may account in part for the particular difficulty young sighted children have with laterally inverted forms. A small group of children who were totally blind since birth distinguished mirror pairs by touch significantly more easily than did sighted children of comparable age; and monkeys succeeded at cross-modal recognition of laterally inverted mirror pairs better (relative to control pairs) than did sighted children.

Russian medical care in the 1990s: a user's perspective.

This article examines medical utilization patterns and attitudes toward the medical care system among the citizens of Russia's second largest city, St. Petersburg. It focuses upon the extent to which both attitudes towards and usage of medical care institutions have changed in the immediate post-Soviet period. A particular concern has been to determine the degree to which utilization and perceptions vary across the socioeconomic status hierarchy. The data were collected in two stages: a mass survey (N = 1500) conducted in mid 1992 and intensive follow-up interviews (N = 44) conducted in late 1994. The findings indicate that urban Russians were very critical of their medical care system at the end of the Soviet period. Most feel that the system has deteriorated even further since the end of 1991, and they are particularly worried about the emergency care system and about hospital conditions. Although people believe that the system now includes more alternatives, very few have changed their medical utilization patterns to take advantage of these new possibilities. This is more a product of their perceived high cost than of principled opposition to "pay" medicine. The analysis also demonstrates the extent to which medical utilization differs by socioeconomic status. lower status individuals tend to utilize the formal medical care system. High status individuals seek help from a variety of sources and, in particular, rely much more heavily on informal connections to the medical care system. The medical help-seeking strategies of higher status groups have proven to be reasonably adaptable to the post-Soviet medical marketplace, while for others finding good quality medical care remains more problematic.

The feasibility of using short-term cultures of ovarian cancer cells for use as autologous tumor cell vaccines as adjuvant treatment of advanced ovarian cancer.

OBJECTIVE: We have tried to establish short-term cultures of autologous tumors from patients with stage III and IV ovarian cancer, which could be used as active specific immunotherapy, (i.e., autologous vaccine) in such patients after debulking surgery & combination chemotherapy. METHODS: Between 5/93 and 11/97 the Hoag cell biology laboratory received 53 ovarian tumor samples that had been surgically excised at the time of laparotomy, and four samples of malignant ascites. Efforts were made to establish short-term tumor cell cultures as confirmed by morphology & phenotype. RESULTS: Short-term proliferating cultures were successfully established from 21/57 samples [37%] which included 8/24 [33%] successes from samples obtained at diagnosis compared to 13/33 [37%] samples obtained at the time of a relapse [p = 0.45]. The probability of successful culture was not related to tumor size for samples with a range of 0.8-34 g (mean 5.8 g). One patient was treated in the setting of metastatic disease and one in the adjuvant setting; both received repeated injections of irradiated autologous tumor cells plus granulocyte macrophage stimulating factor (GM-CSF). In one patient a delayed tumor hypersensitivity skin test converted from negative to positive. CONCLUSIONS: Short-term cultures of autologous tumor cells for use as tumor cell vaccines can be established for about one-third of patients with ovarian cancer using this methodology and the treatment approach is feasible.

Gripping and moro responses: differences between small-for-gestational age and normal weight term newborns.

Small-for-gestational age and normal weight term newborns were compared on the grip and the Moro reflex. Responses were elicited by a rapid downward tilt of a board upon which the baby rested. Under the grip condition the baby held a bar with his left hand, while the baby's hands were free during the Moro condition. Two phases of the grip (finger flexion and relaxation time) and the Moro (arm extension and flexion) were measured. Small babies differed from normal weight term babies only on the second phase of each response. They took longer to relax their grips but showed weaker arm flexions during the Moro. Magnitude of Moro flexion was not related to grip amplitude, but was negatively correlated with grip relaxation time. Two explanations for these findings, related to the activity of the antagonist or of the agonist muscles involved in the two responses, were considered.

Maternal drug use during pregnancy: are preterm and full-term infants affected differently?

This study examined whether preterm infants are more vulnerable to the effects of prenatal drug exposure than are full-term infants. The sample of 235 low-income African American mothers and their infants included 119 cocaine-polydrug users, 19 alcohol-only users, and 97 nonusers; 148 infants were full term and 87 were preterm. Direct effects of exposure on birth weight, birth length, ponderal index, and irritability were moderated by length of gestation: Fetal growth deficits were more extreme in later-born infants, whereas increases in irritability were more extreme in earlier born infants. Effects of exposure on cardiorespiratory reactivity to a neonatal exam were not moderated by length of gestation. In general, effects of exposure occurred for both cocaine-polydrug and alcohol only users and so could not be unambiguously attributed to either of these drugs alone.

The deprofessionalization of Soviet physicians: a reconsideration.

Traditional explanations for the relatively low status of the Soviet medical profession credit the Bolshevik government in the 1920s with deprofessionalizing or "leveling" a once autonomous and powerful occupational group. This article presents new data which challenge that interpretation. The Russian medical profession was never autonomous and powerful. Many physicians cooperated with the Bolsheviks because of shared beliefs regarding the organization of medical care. By the late imperial period, many physicians advocated the inclusion of all medical workers in policy-making administrative organs. Focusing upon Russian psychiatrists, the author analyzes the events that prompted the profession to adopt this position. The finding of greater continuity between prerevolutionary Russian and Soviet physicians suggests that this presumably anomalous case has greater significance for theoretical models of professionalization and occupational prestige than previously supposed.