Health-Related Quality of Life in Common Variable Immunodeficiency Italian Patients Switched to Remote Assistance During the COVID-19 Pandemic.

BACKGROUND: A rapidly expanding pandemic of the new coronavirus has become the focus of global scientific attention. Data are lacking on the impact of the pandemic caused by the severe acute respiratory syndrome coronavirus 2 on health-related quality of life among patients affected by primary antibody deficiencies (PADs). OBJECTIVE: To identify factors impacting the health-related-quality of life (HRQOL) among Italian patients affected by PADs switched to remote assistance at the time of the coronavirus disease 2019 pandemic. METHODS: The quality of life was surveyed in 158 patients with PADs by the Common Variable Immune Deficiency Quality of Life questionnaire, a disease-specific tool, and by the 12-item General Health Questionnaire, a generic tool to assess the risk of anxiety/depression. Since the beginning of the coronavirus disease 2019 epidemic, we shifted all patients with PADs to home therapy, and activated remote visits. Questionnaires were sent by email 4 weeks later. Common Variable Immune Deficiency Quality of Life questionnaire and 12-item General Health Questionnaire data scores were compared with the same set of data from a survey done in 2017. RESULTS: Of 210 patients, 158 (75%) agreed to participate. The quality of life was worse in the group of patients who were at risk of anxiety/depression at the study time. HRQOL was similar in patients forced to shift from hospital-based to home-based immunoglobulin treatment and in patients who continued their usual home-based replacement. The risk of anxiety/depression is associated with pandemia caused by the severe acute respiratory syndrome coronavirus 2 and with patients' fragility, and not with related clinical conditions associated with common variable immune deficiencies. Anxiety about running out of medications is a major new issue. CONCLUSIONS: The coronavirus disease 2019 epidemic impacted HRQOL and the risk of anxiety/depression of patients with PADs. The remote assistance program was a useful possibility to limit personal contacts without influencing the HRQOL.

Administration of Home Intravenous Chemotherapy to Children by their Parents.

OBJECTIVES: Caring for a child with cancer can disrupt family life and financial stability, in addition to affecting the child's social, emotional, and educational development. Health care providers must consider ways to minimize the negative impact of illness and hospitalization on the child and family. This study evaluates a nationwide initiative to educate and support parents to administer chemotherapy to their child in their home. METHOD: A questionnaire was circulated to parents participating in a home chemotherapy program from 2009 to 2014 (n = 140), seeking their perspective on the education program, and the benefits and concerns associated with administering home chemotherapy. Data analysis was conducted using a combination of descriptive statistics and content analysis. RESULTS: Questionnaires were received from 108 parents (response rate = 77%). Overall, the program was positively evaluated with 100% of parents (n = 108) reporting that the training met their needs. More than one-third of parents (41%, n = 44) initially felt nervous about home chemotherapy but reported that the education program helped assuage their concerns. Benefits included reduced financial costs, reduced travel time to hospital, less disruption to family life, and less stress for the child and family. No medication errors were reported during the evaluation period. CONCLUSION: An important feature of the program is the partnership approach, which ensures that parents' decision to enter the program is informed, appropriate for their situation, and centered on the needs of the child.

Essential nursing: lessons from the infusion room.

A patient's long-term experience receiving infusions on an outpatient basis for a serious illess leads him to understand and share insights about the essence of excellent, compassionate nursing care.

The effects of Reiki therapy on pain and anxiety in patients attending a day oncology and infusion services unit.

Reiki is a system of natural healing techniques administered by laying of hands and transferring energy from the Reiki practitioner to the recipient. We investigated the role of Reiki in the management of anxiety, pain and global wellness in cancer patients. Building on the results of a pilot project conducted between 2003 and 2005 by a volunteer association at our hospital, a wider, 3-year study was conducted at the same center. The volunteer Reiki practitioners received 2 years of theory and practical training. The study population was 118 patients (67 women and 51 men; mean age, 55 years) with cancer at any stage and receiving any kind of chemotherapy. Before each session, the nurses collected the patient's personal data and clinical history. Pain and anxiety were evaluated according to a numeric rating scale by the Reiki practitioners. Each session lasted about 30 min; pain and anxiety scores were recorded using a Visual Analog Scale (VAS), together with a description of the physical feelings the patients perceived during the session. All 118 patients received at least 1 Reiki treatment (total number, 238). In the subgroup of 22 patients who underwent the full cycle of 4 treatments, the mean VAS anxiety score decreased from 6.77 to 2.28 (P <.000001) and the mean VAS pain score from 4.4 to 2.32 (P = .091). Overall, the sessions were felt helpful in improving well-being, relaxation, pain relief, sleep quality and reducing anxiety. Offering Reiki therapy in hospitals could respond to patients' physical and emotional needs.

Process of normalization in families with children affected by hemophilia.

To understand the normalization process in families with hemophiliac children, and to explore the impact of two different therapeutic regimes on it (on-demand therapy and prophylaxis), we conducted a two-phase study using semistructured interviews. In the course of the first phase, we interviewed 13 parents belonging to 10 families with hemophiliac children in on-demand therapy. In the second phase, 5 years later, we repeated the interviews with three families who began prophylaxis at different times. We analyzed the interviews using text analysis software. The results show very different representations of hemophilia and daily life. Normalization processes involve the overcoming of a divided conception of life, and encourage the integration of care practices within daily life. Moreover, in our article we suggest that although prophylaxis facilitates the recovery of a regular family routine, it alone cannot produce normalization.

Using syringe drivers in palliative care within a rural, community setting: capturing the whole experience.

The aim of this research was to understand how the introduction of a syringe driver, which is considered routine practice in many palliative care settings, impacted on patients, carers and community nurses within a rural, community setting. A phenomenological study was conducted exploring the experiences from the perspective of patients (n=4), carers (n=9) and community nurses (n=12) when syringe drivers are used at home. We interviewed patients and carers in their own homes and conducted two focus groups with community nurses who had an interest in palliative care but were not specialists. Despite the wide use of syringe drivers within palliative care, our study found their use among community nurses, particularly in rural areas can be variable with frequent time lapses between a nurse's exposure, impacting on both their technical abilities and knowledge. In-depth interviews with patients revealed few barriers to their use, but carers clearly identified areas where their expectations and experiences differed and where more information setting realistic goals of care would have been helpful. The authors conclude that although nurses require competencies related to syringe drivers, they also need an in-depth knowledge of the actions of the drugs and the likely changes which occur physiologically as patients approach the end of their life. This will ensure accurate information is delivered, and facilitate meaningful dialogue.

Continuous at-home postoperative analgesia using a catheter in the case of hand surgery: preliminary study about 40 cases.

In hand surgery, ever since continuous at-home postoperative analgesia (CPA) was implemented, procedures which cause pain for more than 24h can now be performed in ambulatory surgery. The aim of our work was to study the feasibility of CPA. Our series comprised 40 patients with a mean age of 50 years. Twenty-four patients had an ASA score of 1 and 16 patients had an ASA score of 2. Indications were osteoarthritis and rheumatoid diseases. Three steps were involved: preoperative (patient screening and information), peroperative (placement of a peripheral nerve catheter through an axillary approach using an elastomeric device) and postoperative (at-home patient care provided by visiting nurses). Evaluation was rated using a CPA score (0 to 10) based on analgesia quality and network organization data. The global CPA score was 1.85. The quality of analgesia (2.6) scored less than the quality of organization (1.1). In the case of analgesia, sleep obtained the lowest score, followed by pain, and lastly, unwanted events. As far as organization was concerned, the network obtained the lowest score, followed by patient satisfaction, and lastly, patient information. Problems were encountered due to insufficient nurse training, analgesia failures, as well as unwanted events related to the oral antalgic treatment. However, technical success was almost always achieved. Our results show that the indications for ambulatory surgery could be extended and hospital-private practice networks be further developed. CPA appears to be a promising technique for analgesia and ambulatory surgery.

Self-infusion programmes for immunoglobulin replacement at home: feasibility, safety and efficacy.

This review of the currently available literature from more than two decades of clinical experience with self-infusions of immunoglobulin at home provides evidence to support the feasibility, safety, and efficacy in all age groups. Self-infusions at home not only increase patient confidence and their understanding of the immune deficiency but also contribute to the improvement of health-related quality of life. Such home therapy programs should be encouraged, and wherever possible, experienced centers should extend their services to include patients who require immunoglobulin therapy for immunomodulation. Home therapy programs play an important role in long-term health outcome.

Cytotoxic chemotherapy for incurable colorectal cancer: living with a PICC-line.

AIMS: (i) To determine which aspects of living with a peripherally inserted central catheter (PICC) line cause Modified de Gramont (MdG) patients most difficulty. (ii) To explore MdG patients' views of the PICC-line experience. (iii) To determine if patients view PICC-lines as a benefit or a burden when receiving ambulatory MdG chemotherapy. DESIGN: A two-stage, descriptive study. METHODS: Phase 1 comprised semi-structured interviews. Phase 2 surveyed the MdG population. Phase 1 interview data informed the Phase 2 questionnaire. The setting was a West of Scotland Cancer Care Centre and the sample was: Phase 1, a convenience sample of 10 MdG patients; Phase 2, 62 consecutive patients. RESULTS: A response rate of 93.9% for Phase 2. The majority of PICC-line patients held favourable views towards having a PICC-line and adapted well with minimal disruption to daily life. Concerns were evident regarding coping at home with a PICC-line, chemotherapy spillage, dealing with complex information and the responsibility of patients/carers regarding PICC-line management. Patients preferred ambulatory chemotherapy to in-patient treatment. CONCLUSIONS: PICC-lines should be considered for more chemotherapy patients but service development is necessary to ensure individual needs are addressed. RELEVANCE TO CLINICAL PRACTICE: Contributes to the PICC-line literature by providing a national patient perspective on a range of daily living activities (DLAs). PICC-line patients prefer out-patient ambulatory chemotherapy rather than in-patient treatment. The longer a patient has a PICC-line, the more able they are to manage activities such as dressing. Concerns remain over chemotherapy spillage, partner/carer responsibility for PICC-line maintenance and the proper balance between required information and what the patient wants to know.

An evaluation of a domiciliary blood transfusion service for palliative care patients in Northern Ireland.

Marie Curie Cancer Care is a national charitable organisation that provides specialist palliative care services to patients with cancer and other life-limiting illnesses. Marie Curie Nursing Service (MCNS) provides nursing services to patients in their own homes. The administration of blood transfusions to palliative care patients is required to improve symptom management and quality of life; however, this procedure often results in unnecessary hospital admissions. Recognising that the majority of patients wish to be cared for and die in their own home, and with national guidance recommending that specialist palliative care services should be provided to patients in their preferred place of care, a recent service initiative by MCNS was domiciliary blood transfusions. While this is not a new service within domiciliary care, this pilot project aimed to capture patient views to evaluate this service initiative. Telephone interviews were conducted, using a questionnaire, with 11 patients who had received the service. Findings indicated positive evaluation of the service. Domiciliary blood transfusions helped to avoid unnecessary hospital admissions, the quality of life of patients and their families was improved in the palliative phase of illness and they received the service in their preferred place of care.

Home-based infusion therapy for patients with Fabry disease.

Fabry disease is an inherited, progressive, life-threatening disease; therefore, lifelong therapy is needed. By replacing the deficient enzyme, disease progression may be delayed or halted, thereby avoiding serious complications. Hospital-based agalsidase therapy is generally perceived as inconvenient and home-based infusion therapy is greatly appreciated by patients, their families and healthcare professionals. Patients can get familiar with infusion therapy in a hospital setting and, if specific requirements are fulfilled, routine nurse-assisted infusion, or self-care, at the patient's home can be organized. A stable patient who tolerates the infusion and a suitable home environment are prerequisites for home therapy. The authors' clinical experiences underscore the safety and practicality of home therapy. In addition to a major positive impact on the patient's quality of life, home infusion therapy may reduce the constraints of hospital resources. This article reviews the collective experiences with agalsidase beta home infusion therapy and outlines how safe, patient-centred homecare can be organized. Home infusion therapy with Fabrazyme should not be withheld from patients considered eligible according to the proposed criteria. Similar approaches to other enzyme therapies are also possible.

Choosing the right intravenous catheter.

Infusion therapy in the home has been common for many years. The therapies appropriate for home infusion are numerous. The type of access device provided for the infusion is an important consideration for safe and effective care. That choice will take into consideration physician and patient preference and length of therapy. However, paramount to this decision are the characteristics of the infusate. It is essential to know the pH and osmolality of the drug as well as its potential vesicant properties. The nurse needs to act as the patient advocate to ensure that proper catheter selection is made. Patient teaching should be aimed at recognition of complications and immediate interventions to avoid problems.

Pediatric home chemotherapy: infusing "quality of life".

A pediatric home chemotherapy program is described that has operated as part of the pediatric oncology services at the Children's Hospital at Montefiore since 2004. Currently the chemotherapy regimens include high-dose methotrexate; 5-day high-dose ifosfamide and etoposide; cyclophosphamide, doxorubicin, and vincristine; ifosfamide, carboplatin, and etoposide; and cisplatin and doxorubicin. The pediatric hematology/oncology program provides care to children with blood disorders and cancer of Bronx, NY, and surrounding areas. By providing patients receiving chemotherapy treatment with this special type of home infusion capability, the child and his or her family are able to spend more time at home and have less disruption in their family schedule.

A pathway for moral reasoning in home healthcare.

Ethical issues arise in the practice of infusing nursing, and when they do, the home care nurse can find guidance in the code of ethics. This article addresses the importance of the code of ethics and introduces a framework for decision-making to assist the home care nurse in determining a course of action in the face of ethical quandaries.

Children receiving chemotherapy at home: perceptions of children and parents.

The aim of this descriptive exploratory study was to determine the perspectives of parents and children with cancer on a home chemotherapy program. Qualitative analyses were used to organize data from 24 parents and 14 children into emerging themes. Themes included (1) financial and time costs, (2) disruption to daily routines, (3) psychological and physical effects, (4) recommendations and caveats, and (5) preference for home chemotherapy. When home chemotherapy was compared with hospital clinic-based chemotherapy, parents reported fewer financial and time costs and less disruption to their work and family schedules, and children reported more time to play/study, improved school attendance, and engagement in normal activities. Although some parents felt more secure with hospital chemotherapy, most found it more exhausting and stressful. At home, children selected places for their treatment and some experienced fewer side effects. Although some coordination/communication problems existed, the majority of parents and children preferred home chemo-therapy. Home chemotherapy treatment is a viable, acceptable, and positive health care delivery alternative from the perspective of parents and children with cancer.

Intravenous enzyme replacement therapy: better in home or hospital?

This article evaluates satisfaction with enzyme replacement therapy (ERT) at home and at hospital in adult patients with Fabry and Gaucher diseases. A questionnaire was developed and sent to 34 patients with Fabry disease who were receiving ERT with agalsidase alfa (Replagal) and to 49 patients with type I Gaucher disease who were receiving ERT with glucocerebrosidase (Cerezyme). Of the 45 returned questionnaires, 20 were from patients with Fabry disease and 25 from patients with Gaucher disease. Hospital treatment visits were reported as stressful by 18 patients (40%), whereas only 4 (9%) patients reported that home therapy was stressful. Both groups of patients adjusted well to receiving home-based therapy. Nearly all of the patients with Fabry disease (19 patients, 95%) and Gaucher disease (21 patients, 84%) preferred home-based therapy. Treatment in the home was reported as more comfortable, less stressful, more effective and had less impact on family life. Only 4 (9%) patients chose to continue receiving infusions in hospital. The majority of patients with Fabry disease and Gaucher disease found home-based therapy to be more convenient and less stressful than hospital-based therapy.

Patients' experience of ambulatory self-administration of pamidronate in multiple myeloma.

The aim was to explore ambulatory self-administration of Pamidronate (Self-A-Pam) from a patient perspective in patients with multiple myeloma. Pamidronate is normally administered once a month as an intravenous infusion over 2 to 4 hours. Twenty-one patients were included, of whom 13 (6 women, 7 men) with a median age of 56 years (range 37-70) completed the educational program and subsequent ambulatory Self-A-Pam. An RN at the hospital initiated the Pamidronate therapy (90 mg). The patients then left hospital and later, on completion, they disconnected the infusion, either alone or with the assistance of a relative or significant other. Interviews were used to collect information about the experiences during the course of the Self-A-Pam. In total, 12 patients were interviewed after 3 doses of Self-A-Pam. One patient declined to participate in the interview. A qualitative analysis of the textual data was performed. Five main categories were identified: decision concerning Self-A-Pam, information and education, sources of practical help or support, effects of Self-A-Pam, and feelings and activities in relation to place (hospital, home, or public place). All 13 patients who started on Self-A-Pam went through 3 courses of Self-A-Pam during the study period. Many patients reported a gain in feelings of freedom/independence and time saving. However, some patients reported insufficient education and feelings of anxiety associated with the responsibility of handling the venous access device.

Home infusion therapy: essential characteristics of a successful education process: grounded theory study.

Little research has been published on the education process from the perspective of family caregivers. This article reports the findings from a grounded theory study of caregivers who successfully learned how to deliver home infusion therapy for a family member. The participant sample was drawn from the home infusion service of a metropolitan health maintenance organization in the western United States. The objective of the study was to identify, from the caregiver's point of view, the characteristics of an education process that resulted in the learner's competence with home infusion therapy. The knowledge gained from this study can be used to develop a framework for examining and planning practice guidelines that reflect the expertise of the nurse and the experiences of the learner.

Patients' perspectives on high-tech home care: a qualitative inquiry into the user-friendliness of four technologies.

BACKGROUND: The delivery of technology-enhanced home care is growing in most industrialized countries. The objective of our study was to document, from the patient's perspective, how the level of user-friendliness of medical technology influences its integration into the private and social lives of patients. Understanding what makes a technology user-friendly should help improve the design of home care services. METHODS: Four home care interventions that are frequently used and vary in their technical and clinical features were selected: Antibiotic intravenous therapy, parenteral nutrition, peritoneal dialysis and oxygen therapy. Our qualitative study relied on the triangulation of three sources of data: 1) interviews with patients (n = 16); 2) interviews with carers (n = 6); and 3) direct observation of nursing visits of a different set of patients (n = 16). Participants of varying socioeconomic status were recruited through primary care organizations and hospitals that deliver home care within 100 km of Montreal, the largest urban area in the province of Quebec, Canada. RESULTS: The four interventions have both a negative and positive effect on patients' lives. These technologies were rarely perceived as user-friendly, and user-acceptance was closely linked to user-competence. Compared with acute I.V. patients, who tended to be passive, chronic patients seemed keener to master technical aspects. While some of the technical and human barriers were managed well in the home setting, engaging in the social world was more problematic. Most patients found it difficult to maintain a regular job because of the high frequency of treatment, while some carers found their autonomy and social lives restricted. Patients also tended to withdraw from social activities because of social stigmatization and technical barriers. CONCLUSIONS: While technology contributes to improving the patients' health, it also imposes significant constraints on their lives. Policies aimed at developing home care must clearly integrate principles and resources supporting the appropriate use of technology. Close monitoring of patients should be part of all technology-enhanced home care programs.