Introduction
Based on the scoping work undertaken to facilitate this research and discussions with our advisory group, we were aware that there appeared to be variation in chemotherapy delivery practices throughout the UK. This variation was expected to include the likely existence of a variety of systems, reflecting the different challenges of large cancer centres and district hospitals, for example. Nurse-led chemotherapy is established in some centres but home delivery of chemotherapy is not widespread. Different geographic challenges exist for provision in remote and rural communities compared with more urban-based centres.3,10 Some hospitals elect to utilise private providers to deliver services, while some elect to deliver these ‘closer to home’ services using their own NHS resources. To gain insight into the variation in current practice in the NHS, we undertook a survey canvassing views from relevant professionals about their experience of the delivery of home and community chemotherapy. The survey was not intended to be comprehensive; rather, it was intended to provide a general overview that would help to describe the patient pathway and inform the development of the decision model.
Methods
Owing to the likely variation in private provision and NHS provision of services, we designed two questionnaires on current provision of intravenous chemotherapy administered at home and in the community. Both were administered using an internet-based survey programme (Survey Monkey: www.surveymonkey.com) between June 2013 and September 2013. One was circulated to NHS trust organisations providing chemotherapy services and the other was sent to commercial organisations identified as providing home care or community services on behalf of the NHS.
Invitations to participate in the NHS provision questionnaire were sent via e-mail to stakeholders across England and Wales. Individuals were identified via the Cancer Network websites (where still available) and their replacement clinical groups, and through contacts provided by members of the advisory group. The survey was administered between June 2013 and September 2013. Invited participants were encouraged to disseminate the questionnaire to colleagues. Briefly, the questionnaire asked participants whether or not their hospital offered chemotherapy at home and/or in the community, how long their service had run for, who delivered it, what type of pharmacy was use and staffing details, as well as setting characteristics for the community setting. The full survey is available in Appendix 9.
The private provider questionnaire was sent to HaH, Calea UK Ltd, Bupa Home Healthcare, Baxter, Polar Speed Distribution Ltd, Alcura UK, Evolution Homecare Services Ltd, B. Braun Medical Ltd and MedCo. These providers were identified via the advisory group who provided contact details for the National Clinical Homecare Association, an industry body representing companies providing clinical home care services to NHS patients along with charitable and independent sectors within the UK. In brief, the survey asked whether the organisation delivered intravenous chemotherapy in the home or community setting on behalf of the NHS, what aspects of home or community chemotherapy were provided, who was involved in administering and overseeing the service, and whether or not any unpublished information was available. For organisations that provided the service, follow-up questions were sent to gather further details about provision of home- and community-based intravenous chemotherapy. The full survey is available in Appendix 10.
Responses
The aim of the surveys was to provide a general overview of current provision to inform this project. In the following sections we describe and summarise the main responses to the surveys. Full details of all responses to both surveys are available on request.
NHS provision survey
Respondents and services provided
We sent 65 e-mails inviting stakeholders to participate and sent a reminder e-mail to non-respondents after 2 months. Respondents were encouraged to forward the survey to other contacts; this increased the number of responses at the expense of making the percentage response unclear.
In total, 26 people from 22 organisations provided usable survey responses to the NHS survey. Sixteen of the 22 organisations were in the north of England and six were in the south. Organisations included trusts, specific hospitals and one commissioning body. Respondents were in various roles including commissioners, pharmacists, cancer nurses, oncologists, regional managers, haematologists, directors and administrators. All survey respondents were in England.
Ten organisations provided chemotherapy at home or in the community: three delivered intravenous chemotherapy only in the home, three delivered only in a community setting and four delivered treatment in both settings.
provides a flow chart demonstrating the services provided by respondents.
Flow chart of current NHS provision of home and community intravenous chemotherapy. a, Herceptin®, Roche.
Aspects of the service and pharmacy use
Two of the seven organisations that provide chemotherapy at home indicated that the NHS delivered all aspects of the service, one failed to respond and four indicated that they used a private provider to deliver some or all of the service. Two of those using a private provider indicated that they used a hospital pharmacy for home chemotherapy; both of these deliver treatment in the home and community setting. The other two organisations which deliver in both settings were both NHS-provided services, including pharmacy.
Two of the three organisations providing treatment only in a community setting indicated that the NHS provided all aspects of the service, including hospital pharmacy, and one did not respond. provides service provision details for settings offered, pharmacy use and training/recruitment requirements for services in the home or community.
Provision of home and community chemotherapy
Staff and training necessary for administration of chemotherapy at home or in the community
Staff involved in administration of chemotherapy in the home or the community included oncologists, nurses, haematologists and pharmacists. Five organisations responded that additional training and/or additional recruitment was required for their service, two indicated that no additional training was required and three did not respond. Nurses were the focus of additional training, which included training nurses to higher certification levels, training them on how to use mobile chemotherapy units (chemotherapy bus), and lone-worker training. Three of the five organisations that indicated additional training was required delivered in both settings (two NHS and one private provider). Two organisations delivered only in a community setting using a NHS service.
Three organisations indicated that hiring additional staff was required, while two indicated that it was not and five failed to respond. All of those that indicated that they would need to hire additional staff also indicated that additional training would be required; two of these were community NHS-delivered services and the other a NHS-delivered service across both settings. The two organisations that indicated no additional hiring also indicated no additional training requirements; both services had home services that were delivered by private providers.
The number of nurses involved in delivering intravenous chemotherapy in a home or community setting varied between organisations. Two organisations used one nurse at their community locations and three organisations used two nurses. Two organisations did not report how many nurses they used for community chemotherapy locations. The number of nurses who administered each individual treatment at home and community locations was fairly consistent. All five organisations that provided a response reported that one nurse was involved in each intravenous treatment.
The details of services provided, by whom and where, plus additional staff hiring and training requirements for each of the organisations, are presented in .
Eligibility for participation in home chemotherapy
Various eligibility policies were described for home chemotherapy. One of four organisations that provided home chemotherapy via a private provider reported an eligibility requirement of ‘a few’ cycles delivered in hospital; another reported that eligibility decisions were based on regimens; and two did not report eligibility requirements. There were few responses regarding eligibility requirements for chemotherapy; three organisations provided no response to eligibility requirements for chemotherapy at home and one reported that drug regimen suitability determined patient eligibility for chemotherapy at home.
Three of the seven organisations that provided chemotherapy at home reported that patients were referred to the service by consultants, and two indicated that consultants and specialist nurses could refer patients to the service. No other organisations provided referral details.
Three organisations provided estimates for the proportion of patients eligible for the home service and the proportion of patients accepting the service. There was a mix of proportions eligible and accepting, with some eligibility levels of < 5%. Both organisations that indicated < 5% eligibility also indicated that they used a home-care provider, with HaH named by one. Both organisations that had home services completely delivered by the hospital reported eligibility levels higher than those using a service delivered through a home-care provider ().
Patient eligibility requirements for chemotherapy at home or in the community
Eligibility for participation in community chemotherapy
In the community setting, patient eligibility criteria focused primarily on suitability of regimens and patient distance from their hospital. Only one organisation expressed eligibility limitations based on which cycle of chemotherapy was being administered; they reported that patients must be fit and have had two cycles in hospital. Two indicated that distance of patient travel was a factor in eligibility, but did not quantify what distances were acceptable. Three quantified the percentage of patients eligible for chemotherapy in the community: one reported that 60% of patients were eligible and 80% of eligible patients accepted; another reported that 10–15% were eligible and 10–15% accepted; and a third reported that 50% of patients were eligible, with 30% accepted (see ).
Provision of chemotherapy services at home and in the community
Three organisations delivered chemotherapy in the community using mobile chemotherapy units. The other four organisations that delivered intravenous chemotherapy in a community setting used different locations: two in community hospitals, one in a satellite unit in a primary care centre and another used a room in a local hospice.
There were several similarities between home and community chemotherapy administration. Patients in both settings were cared for between chemotherapy treatments at their regular institutions and given access to standard 24-hour advice telephone lines, and patients were referred to both services by consultants and specialist nurses.
Organisations that indicated they did not provide chemotherapy at home or in the community
There were 12 organisations that did not provide intravenous chemotherapy at home or in the community; six indicated that they were interested in providing a service and three indicated that they may be interested in providing a service in the future. One organisation had indicated that they provide home chemotherapy, but only provided home trastuzumab. No organisations said that they would not consider providing a community or home service. Of the six organisations that said they would consider providing a service, one organisation was working on a proposal for a service, and another indicated that a service was not offered yet but was at an advanced stage of planning.
Barriers to service delivery
One of the aims of the survey was to identify barriers to service provision in the community and at home from those who provided services, and those who did not provide services. Common concerns existed in both groups. The full set of responses to these questions is available on request. Some commonly perceived barriers highlighted by responders were:
costs of running a service
value-added tax (VAT) savings, which were driving which drugs were offered at home rather than the suitability of the drugs for administration at home
the fact that there might have been less expensive ways to deliver chemotherapy in the community than delivering at home, but current regulations did not allow or incentivise more efficient community delivery
issues with consultant support for home services
poor strategic planning
broad geographical area that would be difficult to serve
interest in delivering a service but lack of a commissioned service
limited numbers of eligible chemotherapy regimens
lack of nursing resources
lack of suitably trained staff
a need to convince patients to use the service.
There were several limitations to the survey: the sample was small; the information provided by respondents was generally not very detailed; the survey requested recollections and descriptions from providers rather than service data; and questions were not always interpreted as intended. However, the aim was to provide a picture of current provision and add clarity to the patient pathway, where possible. The survey highlights the wide variation in current provision.
Private provider survey
All nine groups that we contacted responded to the survey but only HaH, Bupa Home Healthcare and Calea Ltd currently provided chemotherapy closer to home. None of the respondents described providing intravenous chemotherapy services in a community setting. However, the survey did not have differentiated questions regarding home and community services, and so a description for a home service did not necessarily preclude the provision of intravenous chemotherapy in a community setting. Both HaH and Bupa ran comprehensive home chemotherapy services that included patient registration; prescription, preparation and delivery of cytotoxic drugs; supply of nurses; patient counselling, and telephone support for adverse reactions; and logistics and waste removal for a variety of chemotherapy regimens (specific regimens were considered commercially sensitive and not disclosed). Calea provided off-the-shelf and compounded methotrexate to NHS trusts in the Yorkshire region inclusive of nurses where necessary. HaH indicated that they provided chemotherapy in the home or community setting to more than 40 NHS trusts. Bupa did not provide information on how many NHS organisations they provided with home or community chemotherapy services.
Further follow-up with the organisations yielded limited results. Questions about customer satisfaction, quality-of-life data, cost data and resource use were generally unanswered. Some providers said that information on these outcomes was commercially sensitive; other organisations might have been non-responsive for similar reasons. HaH responded to some queries, and instructed our team to seek answers related to quality of life, patient satisfaction, adverse events and resource use from their health informatics service, Sciensus Ltd. On investigation it was apparent that information was not freely available from Sciensus. We did not pursue paying for information.
Healthcare at Home provided some useful descriptions of their service via personal communication (S McAndrew HaH, 12 September 2013, personal communication). They indicated that their home chemotherapy service uses a regional hub for northern Europe, with support services for adverse reactions and general patient counselling provided from this facility. They also indicated that next-day service was available to the UK mainland, major islands and northern Europe using their own vehicle fleet from their regional hub. According to HaH, nurse travel to patients and between patients averaged 1 hour. HaH used their own private pharmacy, which might have made them eligible for a zero VAT rating on drugs they delivered in the home, under current UK legislation.68
Bupa did not respond to additional requests for information but their website was very informative and included thorough service descriptions and a full list of chemotherapy regimens eligible for home delivery.69,70 Bupa provided a business example on their website where the cost of a drug administered at home is reduced by 20% compared with NHS administration. This appeared to indicate that private providers were providing drugs with zero VAT liability.69
From the private provider survey, it is clear that the consolidated nature of the private providers enabled them to serve larger regions. All private organisations that provided home chemotherapy to the NHS did so across multiple trusts.
Summary of current provision
There was great variety in service provision, with differences in the total number of staff involved, who provided services and how they were provided. The total number of nurses involved in delivering home and community services varied across providers, but the numbers administering each individual treatment were consistent: one at home, and one or two in the community setting.
Private providers were often used for administering home chemotherapy; this usually entailed using a private pharmacy. These private providers appear to have very selective eligibility criteria to their programmes and only accept patients after two or more cycles have been delivered in hospital. The percentage of patients eligible in privately provided programmes was lower than that provided in services that were administered completely by the NHS. Outside private provider requirements for a certain number of cycles in hospital, regimen appeared to be the most important determinant of eligibility, followed by patient performance.
Community settings included three mobile units (chemotherapy bus), two community hospitals, a satellite unit in a primary care centre and a room in a local hospice. Most community providers indicated that the NHS provided all aspects of the service. Regimen and patient fitness for treatment appeared to be the most important determinants of eligibility for home chemotherapy. More patients were eligible for chemotherapy in the community than at home.
Private providers were found to offer a potentially wide variety of regimens70 and provide comprehensive chemotherapy services to a large number of trusts (HaH), but it was unclear what effect their services had on patient quality of life or patient satisfaction. Private providers were able to take advantage of VAT exemptions for drugs, and provide services across multiple providers, both of which could lead to less expensive and more efficient service capabilities.
